Saturday, December 30, 2006

The Strike Continues

Clare's eating strike continues. Yesterday, she ate nothing all day. At dinner, we decided to do a pizza party and watch a movie (something Jamie loves to do and usually Clare enjoys it, too). As we all watched "Over the Hedge," Clare just sat there with her tray full of various food items. Occasionally, she would take a sip of milk. By the end of the movie, we noticed that Clare had eaten two pieces of pizza, and we were ecstatic. I was hopeful today would bring better things.

Not the case. Clare refused to eat anything all day except two pieces of Pirate Booty (small rice-puffed thingys). She turned her nose up at breakfast, played with her food at lunch, and cried throughout dinner. We even took her out of the highchair and put her in a booster seat at the table, so she could eat like a big girl. We let her have her bowl and fork like Jamie and didn't even put a bib on her. She didn't seem to care. She barely even drank her milk today.

I am getting increasingly frustrated and concerned. It is definitely stressing me out because every little thing sets me off and I cry easily. (I know, I know, could be just pregnancy hormones!) Maybe Clare is just experiencing a "typical toddler" eating strike. We never went through this with Jamie, though, and Clare cannot afford to stop eating. We have a follow-up with the pediatrician on Tuesday. I honestly do not know what I am going to do if Clare has lost more weight. After our battle with the GI's office the other day, I am not 100% keen on working with him on this. Our only advice from the pedi to cut down on her milk has not made a difference. In fact, some days, Clare does not even finish her allotted 16 ounces of milk (when before the strike she was drinking up to 32 ounces per day). Please let some molar break through so we know what's going on and that this will end!!

Friday, December 29, 2006

THOSE Parents

Yesterday Shawn and I were the parents from hell. To the doctors, at least! We were THOSE parents - pushy, nagging, persistent, wouldn't take "no" for an answer.

After we got home from Clare's appointment yesterday, Shawn and I just weren't satisfied with the non-answers we received. Clare's eating strike started about a week after we switched her to the high-calorie, high-calcium fortified milk and a daily multivitamin. All of a sudden, she is getting 40-60% more calcium a day plus Vitamin D, which we have always limited due to the fact that many children with WS are prone to hypercalcemia (a build-up of calcium in the system - for some reason, children with WS have difficulty processing calcium and Vitamin D aids in calcium absorption). Clare's calcium levels have always been on the border between the high end of normal and low end of abnormal. Yet every time her levels are tested, the numbers are a tad bit higher. Could this sudden explosion in calcium have pushed her over that "normal" edge? Hypercalcemia can lead to very serious consequences. One of my WS-mommy friends, Amy, spent three weeks in the hospital last year with her daughter (who is only a month older than Clare) due to hypercalcemia. Avery presented with symptoms similar to the flu or a cold, and it was not until she went into kidney failure that the doctors finally figured out Avery had severe hypercalcemia, not just a cold. When Amy read my post and called me about Clare, Shawn and I knew we needed to pursue this further. I looked up hypercalcemia online and Clare's symptoms fit - poor appetite, excessive thirst, frequent urination, lethargy, weakness, irritability, abdominal pain.

Checking for hypercalcemia and kidney failure is as simple as a blood test. In fact, Clare's GI was ordering a multitude of tests for Clare in a few weeks. We were just waiting for her appointment with the endocrinologist and for his tests, so Clare would only have to undergo one needle stick. Now, however, two needle sticks were the least of our concerns. We just wanted to have Clare tested ASAP. That proved not to be as easy it sounds, though. Shawn initially called Clare's GI in the morning to see about moving up the tests to that day. He asked that she specifically be tested for her calcium, creatinine, and iron levels as well as kidney function. After relaying this to the receptionist, you wait for the call-back from the nurse, who then goes over the exact same information. Then you wait for another call-back from the nurse after she relays the info to the doctor. Hours after Shawn talked to the nurse for the first time, we were still waiting for the call saying the blood work was ordered, and we could take Clare to the lab. It was now close to 4pm, and we were originally told the doctor was leaving at 4pm, so Shawn called the office. After much discussion with the nurse (who was becoming less and less pleasant with each phone call), she finally said that the GI would order the blood work, but he would not be back into the office until Tuesday to read the results. The nurse did not display an ounce of concern that, in the meantime, if Clare did indeed have severe hypercalcemia that she could go into renal failure by the time the doctor got back into the office. Shawn asked if another doctor could read the tests for us. The nurse said she would check with the GI and go ahead and order the blood work. Shawn then called Clare's endocrinologist to see if he could read the results of the blood work - he said either he or the other endo could definitely read the results. (And God bless the receptionist at the endo's office - she was the first person who expressed even some concern over the words "possible kidney failure.") So Shawn and Clare headed over to the lab to get her blood drawn.

While they were gone, the nurse from the GI's office called back and said that the GI would not order the blood work if another doctor was going to read the results. I told her that Clare's endo already agreed to read the results. She said that was not going to work and the blood work would not be ordered. When I told her that Shawn and Clare were already at the clinic to get her blood drawn, the nurse became extremely snippy and started laying into me how she never said the blood work was even ordered so why we would go to the clinic. At this point, I was just so fed up with her attitude that I hung up on her. I then called Clare's endo back to see if he could order the blood work. He was very polite and kind, but said without examining Clare, he could not order the blood work, especially since it was Clare's GI who initially was going to order the blood work and the pediatrician who last saw Clare. Since it had been three months since Clare had last seen her endo, I tried very hard to be understanding about his dilemma. He suggested we talk to Clare's pediatrician. Easier said than done, since Clare's pediatrician was out with a broken foot.

I was able to get in touch with Shawn at the clinic (where he had already learned that no blood work had been ordered). Thank goodness Shawn is a man who knows when to not take "no" for an answer! He went right over to the GI's office (which is next to the pediatrician's) and had all three secretaries working to get the blood work ordered from some doctor or another. Finally, the pediatrician who saw Clare a couple days ago said she would order the tests along with a urine culture. Shawn was able to get the lab to put a STAT on the tests, and we would have the results from Clare's blood work in 2 hours and the urine culture in 48 hours (takes a little longer to grow the culture). Poor Clare had to endure both the blood draw and a catheter to collect her urine. And poor Shawn had to be there with her.

We did get the results of Clare's blood work last night from the pediatrician (who turned out to be very nice and understanding on the phone about our pushiness - we should have just requested all these tests when we were in her office two days ago). Everything came back negative and all her levels were normal. To be on the safe side, the endocrinologist is going to review the results as well (since hypercalcemia would be in his ballpark). We're still waiting for the results from the urine culture, but I expect it to be negative as well. I am so relieved that it is not hypercalcemia or kidney failure. The worst case scenario is not a possibility anymore. We still have no explanation for Clare's eating strike and prolonged sleeping (which continues on Day 11), but at least we know what's NOT causing it.

To wrap this long post up, I have to admit I was very disappointed with the response we received from the GI's office. I can understand the endocrinologist because we dragged him into this, and he had no idea what was going on. I can (kind of) understand the pediatrician because she is not familiar with Clare or her history, plus she is taking care of her own patients while covering for Clare's pediatrician, so I am sure she was super busy during this holiday week. It is Clare's GI, and especially his nurse, that I was upset with. Not knowing how much communication actually went on between the GI and nurse, I cannot say how involved the GI was or not. Who knows when he got the initial message about pushing up the blood work. Who knows if our concerns were relayed to him. But I cannot believe how the nurse treated us. (And, yes, I DO remember your name, lady.) Like we were paranoid, obnoxious parents worried over nothing. Given Clare's long, complicated medical history, her ongoing treatments, her multiple systems involved, this is the first time we have EVER asked for something of the doctor's. And to have to spend the day jumping through hoops (and crying, on my part!) to get simple blood work ordered is ridiculous. I just thank God that we were wrong, and Clare does not have hypercalcemia. But it does make me question how reliable some of her doctors may be (and I leave her cardiologist out of this completely because she has always been someone we could trust and rely on) in a serious circumstance and when push comes to shove.

Thursday, December 28, 2006

Eating Strike

Today marks Day 11 of Clare being on an eating strike. When it first started at the beginning of last week, Shawn and I were not too concerned. She had cut her first molar a couple weeks ago, and we thought maybe a second molar was cutting through, which would obviously be painful. However, as the days went past, Clare's eating (or lack thereof) worsened. She refused to even eat her favorites - glazed donuts and M&M's. We tried everything we could think of to get her to eat. She became fussier and fussier. When no molar came through and Tylenol did not improve her mood or appetite, we decided to wait a couple more days before calling the doctor since it was Christmas. Over the past three days, Clare's energy level decreased drastically and she started sleeping most of the day. After a multitude of phone calls, we finally saw a doctor yesterday.

Clare's GI wanted us to see her pediatrician first to rule out colds or infections as a cause for the not eating. Clare's pediatrician broke his foot and is out of the office, so we saw one of the other pediatricians in the practice. I have met this pediatrician before and like her (she actually was the one in the hospital to first detect Clare's heart murmur), but she is not familiar with Clare now, her history, or Williams syndrome. When she checked Clare out, she said everything looked and sounded normal. No ear infection, signs of strep throat, anything she could see to explain the eating strike. To us, the most alarming thing was that Clare has lost 5 ounces and is down to 16 lbs, 15 oz. It may not sound like a lot, but that was Clare's weight back in July. So to Clare, she has lost six months of weight gain that we have struggled so hard to put on her. The pediatrician was fairly unhelpful with a solution. The only thing she came up with was to decrease Clare's milk consumption going on the theory that Clare was getting full on milk and, therefore, did not want to eat anything else. Shawn and I are not convinced this is the answer since over the last couple days, Clare has not even wanted her milk. But we have no explanations for the eating strike, so are willing to try this. We are going to follow-up with the doctor next Tuesday to check Clare's weight. If she is still losing weight and/or shows no improvement in her appetite, then I am skipping the pediatrician and insisting on an appointment with the GI. Clare is scheduled to have her slew of blood work done in a few weeks with him, but I am sure we can get those pushed up if need be.

We did get Clare to eat two slices of banana this morning before she called it quits. I am very worried about the not eating and losing weight. Clare does not have much weight to lose and we're facing the coldest months of the year here in New England. I feel so powerless because we cannot force Clare to eat, but she needs to eat. I hope next week brings better news.

Wednesday, December 27, 2006

Christmas Collage

The festivities are over. They fly by so fast. Pictures are worth a thousand words, so here goes!

Christmas Eve with Shawn's family brought Clare's first baby doll and Jamie's HUGE castle. Jamie and Clare (as did Shawn and I) loved spending time with their Mimi and Papa, Auntie Becky, and cousins Jasmine and Alex. We missed Uncle Brian, though, who had to work.

Then it was back home for our Christmas. We bravely ventured out for Midnight Mass, which was peaceful and wonderful (for the first hour and a half until Clare decided enough was enough). Jamie and Clare must have both been very good this year (or "wicked good" as Jamie likes to say) because Santa left a bundle of presents under our tree. Clare's favorite was her rocking horse, and Jamie received his HUGE Sharptooth dinosaur (this was the year of big presents! Where are we going to put them all??) and a gorgeous pirate treasure chest (which Shawn made) and Santa filled with dress-up clothes. Unfortunately, Jamie had to take off for the rest of the day, but we were graced with Batman's presence for the remainder of Christmas.

Then it was off to RI to celebrate with my family. A school bus, power tools, aunties and grandparents, and lots of yummy food! What could be better?

Christmas was fun!

Monday, December 25, 2006

Merry Christmas!

May you all have a blessed and happy Christmas!

Love, Shawn, Teresa, Jamie, and Clare

Friday, December 22, 2006

Fading Away...

S~Recently I was going through some pictures from over the past year. I came to one of Clare when she was getting ready to take a bath, and I was shocked by her scar on her chest. I couldn't believe how big and ugly it was. I was surprised by this reaction because I see her chest everyday, especially now since the baby is getting bigger it is difficult for Teresa to bend over to bathe the kids. After looking at the picture, I ran over to Clare and took a look at the scar. Now it is almost non-existent; over the past year, the scar has faded away to nothing. It's amazing! It made me think of what time can do for us. As I thought about her scar disappearing over time, I realized that was not all that faded away. We no longer have constant worries about Clare's health. She is no longer just our WS kid. As Clare's health has improved and her personality shines through, those things seem to slip away, and we are able to enjoy what I like to call "normal times." Clare still has her issues, don't get me wrong. But her issues have become less a part of who she is, - her personality has taken over. The way she says "Dank OU Daddy" after I give her more milk, or when she blows kisses as guests are leaving, the way she loves to roll and wrestle with Jamie (while we cringe because he is more than twice her size), how she plays and hugs her stuff animals, how she gets so excited when we sit her in front of the Christmas tree and let her have free reign - these are the things we are going to remember. The images of us sitting in the waiting room wondering how Clare is doing with the Cath or the Operation, or the constant sitting around in the hospital cafeteria as our family plays cards and makes nervous chit chat, the medication dosing, the urgent calls to Clare's pediatric cardiologist because her feet are a slight bluish color - all of those I know will soon fade away to, "Oh, yeah, I remember that." God has given us a wonderful gift to forget the tragic and relish in the good. So today I am thankful for short-term memory loss, and for scars (not just the ones on our body but our mind as well) that fade away. Merry Christmas!

Tuesday, December 19, 2006

Fetal Echo

Today we had our fetal echocardiogram. It was a little odd to be the one on the table while Clare's echo tech did the echo, her cardiologist reviewed the results, and Shawn and the kids watched. (Poor Clare started crying immediately when we walked down the hallway to the echo room. It was not until she realized that she got to sit in the stroller this time, eat Fruit Loops, and watch the "Muppets Take Manhattan" as well, that she was okay.)

From what the doctor could see, the baby's heart structure, function, and output look great right now. The only "blip" is that there were some extra beats between the upper chambers of his heart. She said they are totally benign at this point, and it was difficult to tell what was causing them, especially since at this stage of development, the baby's heart has an open flap between the two chambers and a duct between the pulmonary and aorta, both which should close before birth. Because I am only 20 weeks along, she wants me to have another fetal echo at 32 weeks, when the heart will obviously be bigger. But, at this point, there is no cause for concern. So we will wait and see how everything looks in another three months.

Karen (our tech) got two great photos of the baby - one of him waving and the other proudly displaying he was a boy (that was for Shawn, she said!).

Monday, December 18, 2006

Too Much Christmas Cheer (Or Our Weekend in Photos)

We had a great weekend. Every once in a while, we have a weekend where we schedule absolutely nothing to do. We spent the last three weekends visiting family out-of-state, so we needed this "nothing" weekend before the Christmas traveling started!

Friday night, we went with friends to take the kids to see the lights at the zoo. The entire zoo was decorated with Christmas lights, and they had some great lighted animals as well (not the real animals!). Jamie had fun trying to spot any real animals sleeping, but the only glimpse we had was of one of the reindeer. (Which he thought was great!) Santa was there as well, so Jamie wanted to see him. We took the kids to see Santa at the mall a couple weeks ago. Clare wanted nothing to do with him, but Jamie did sit on his lap stone-faced. This time, Jamie sat on Santa's lap again and, when he was asked what he wanted for Christmas, he was able to stutter out a "trucks." (Which is pretty funny because, although Jamie does like trucks, it is nowhere near his obsession with dinosaurs, pirates, and superheroes.) And the big shocker was that Clare even sat on Santa's lap! Neither Jamie nor Clare would smile for the photo, but at least we got one!

Saturday was a laze-around-the-house day. Kind of. Shawn tackled some small projects that had been waiting since we moved in eight months ago. Nothing earth-shattering, but each one took about five minutes, so we're not sure what the hold-up was! (Like hanging up our wall mirror, installing the smoke detector downstairs, that kind of stuff.) Jamie and I made gingerbread cookies, and we all decorated them. The cookie with the missing leg naturally became a pirate! We are most likely having a green Christmas this year, it has been so unseasonably warm. It was in the 50's on Saturday, so we took the kids for a walk in their new wagon. Clare LOVED it. She was such a big girl riding in the wagon instead of the stroller! She kept clapping her hands and grinning. She has a new facial expression which we adore. She grins really big while scrunching up her eyes and tilts her head to the side. Her charm is totally coming out now, and she knows how to use it! Both Jamie and Clare went to bed at 6pm because they were exhausted from our fun-filled day, so Shawn and I looked forward to a nice, relaxing evening. Which ended up not happening since my pregnancy tummy got the better of me, and I spent a good portion of the evening in the bathroom. Ahh.... those pregnancy joys.

By Sunday morning, I was fine. After church, Clare's godparents and their 2-year old boy (who is our godson) came over for our pre-Christmas visit and gift exchange. Jamie received a pilot's costume (he loves dressing up these days) and wore it for the rest of the afternoon. Clare had fun with her new ABC blocks and taking ornaments off the tree. We recently brought the walker downstairs so she could zip around the house. She enjoys being mobile. I cannot wait for her to crawl or walk (for her sake, certainly not mine!) because she wants to go where she wants to go. Not where I plop her down. She had a blast circling the house, chasing Midnight into the basement, and causing general mayhem. Sunday was another wonderful, lazy day. All good things come to an end, however. Jamie got sick Sunday evening (maybe mine wasn't just pregnancy sickness after all...), and was fast asleep by 5pm. He woke up this morning right before 5am, watched about 20 minutes of TV while I dozed (Shawn was already up and running for his early morning Monday class), then he fell back asleep in our bed. Almost four hours later, he is still asleep.

Today is usually my babysitting day, but it looks like it's just going to be a quiet day around here instead. I am going to enjoy the peace and quiet of today (unfortunately, even if it comes at the cost of a sick child!) of our last week before Christmas.

Tuesday, December 12, 2006

Just You and Me, Kid

Shawn took Jamie to Maine today to spend the day with Shawn's mom, so it's just the girls. We went to Clare's OT session in the sensory room, did some grocery shopping, and now she is napping while I am baking the dozens of cookies for our cookie swap (and taking a quick computer break!). This morning, after Shawn and Jamie left, Clare and I were finishing our breakfast. I looked at her and said, "It's just you and me, kid." Her response: "Uh oh." How appropriate!

Clare continues to do great with her OT sessions. It helps that she just adores Jessica, and if Clare starts to get fussy (or even scared, like she did today when she tilted a bit on the big swing), Jessica is able to soothe her and distract her with another activity. I don't even need to be in the room anymore. Which I am usually not when Jessica comes to the house, as Jamie needs extra attention during Clare's OT. It was nice to sit in the corner and just watch Clare's session today without any distractions. She played forever in the big corn kernel bucket, unearthing all the scary-looking dinosaurs (a plus to having a big brother is that scary-looking dinosaurs do not even faze Clare). Clare is more vocal every day. We spent this past weekend in RI with my family, and Clare came home saying "auntie" and "na-nia" (her version of Grania, my mom's "grandmother" name). Clare's other new favorite word, learned at OT, is "bubble." Jamie loves the Rudolph movie featuring the Bumble (the ambominable snowman). He especially likes to look for Bumbles while we drive, which always leads to another little voice in the backseat repeating incessantly "bubble... bubble... bubble." The other new phrases in her repertoire are "thank you," "I do," and "rock rock." (She loves to rock on anything! Which is why Santa is bringing her a pint-sized rocking horse.)

Clare's PT is slowly progressing. She still is not even close to crawling - she just hates being in that hands and knees position. She is starting to trust Kelly, her physical therapist, more so she allows Kelly to do harder stuff with her. Her walking is coming along. She will take steps holding your hands now, and does not even protest the entire time, like she used to do. She still cannot transition from laying to sitting, sitting to standing, but she is working on it.

That's it in a nutshell right now. At least I know my Christmas tree is safe for one more year from crawling babies. With any luck, next year, I will have two crawling babies to watch out for!! Back to the cookies...

Thursday, December 07, 2006

Back to the GI... Again

So we're back to frequent trips to the GI. Clare had her six-month follow-up today with her GI. I was so hopeful because she's been eating a greater quantity and variety of food, she LOVES milk with a passion (to the point where we cannot even show her the cup before she eats or she won't eat her dinner, she'll only want to fill up on milk), and she suddenly is growing out of her 9-12 month clothing (yea, since she is over 20 months old!).

The good news is that in the past six months, Clare has grown an inch and a half (explaining the growing out of her clothes). She is staying consistent on her height curve (at a whopping 2% on the charts). However, she has only gained 6 ounces since her last appointment this summer and only an ounce since we were at the office last month for her Synagis shot. (Of which she got her second set of shots today, so Clare is not a happy camper today - she is in hour four of her nap right now.) Much is according to charts at the doctor's, and he is concerned because her weight curve is not a curve at all. It is a flat line. How can you be below 0%?? He kindly plotted Clare on the WS growth chart as well for me, and she jumped to 2% (hooray!), but her growth was still a flat line, so eventually she will "fall off" the WS chart as well. Not so good.

There's always a plan of attack, though. We've all tried to get kids to eat something, so we know how successful that can be. Since Clare loves her milk, we are going to fortify it to increase the calories (which will add an additional 200+ calories to her daily diet). I also have some yummy-sounding samples of Pediasure and Carnation Instant Breakfast Junior to try with her. (They have not been a big hit in the past, but I am always willing to try again.) Clare's GI is concerned about Clare's teensy weensy weight gain, yet he is not doing a full-force attack. We are starting slow and working from there. Since Clare boycotted jarred food some months ago, she has not eaten any fruits or vegetables, other than tomato sauce and the occasional sip of juice (one sip is enough for her). She recently started eating bananas like a monkey, so we're happy with that. However, that's it. So we will also be experimenting with different ways to feed Clare half a Flintstone vitamin every day. Clare is scheduled to have thyroid blood work done next month, so her GI is going to order a full panel of tests as well. (Another thing I appreciate about many of Clare's doctors - they are willing to wait a month for non-urgent tests so we can avoid too many needle sticks.) He is going to test her liver function, kidney function, enzyme levels, repeat C-DIF and other parasite tests (of which she was negative for a year ago), and anything else he can think of to be sure nothing is missed.

Here's to gaining some holiday weight!!

Tuesday, December 05, 2006


We had our first snow yesterday. About 20 minutes of a small dusting which amounted to nothing. But it was enough to make Jamie go "oooooo" and "aaaaaa" and insist on wearing his winter boots and coat to pick up the girls I watch in the morning.

I am in a Christmas flurry right now. I just finished my shopping (courtesy of Amazon). I usually do a lot of online shopping. It's just so much easier than dragging the kids to the mall. I hate shopping, and shopping around Christmas crowds is even worse. Okay, I don't hate shopping, I just hate crowds! To me, the extra money spent in shipping is SO WORTH IT! We are gearing up for our pre-Christmas festivities - cookie swap, playgroup party, caroling (yes, we are actually going caroling this year, and I am so excited about it!), winter lights at the zoo, and trying to squeeze in the new "The Nativity" movie somewhere. Then there's baking, finishing our Christmas cards, wrapping presents, and those special crafty Christmas projects I tackle every year. I know you all have that list that goes on and on and on. But I love the busy-ness and preparation of the Advent season. I really doubt Mary and Joseph were in a state of calm relaxation at this time of year, so it makes me feel a little closer to the turmoil of emotions they must have been going through as they traveled to Bethlehem. With each pregnancy, I have been pregnant at Christmas. I love it because waiting and preparing for the birth of own son reminds me of how Mary must have felt. To a degree. After all, I am not giving birth to the Messiah.

In the middle of the craziness, we take lots of time to enjoy some quiet time. Or at least down time (quiet time is practically unheard of in this household!). Shawn was headed out this afternoon on a three-day business trip, so this morning after Clare's OT (of which, she is doing phenomenal, so I will have to share that later), we all sat around and sang Christmas carols. Jamie "helped" me play the piano, while Shawn and Clare had other instruments. It was so nice to sit there at 10 am on a Tuesday morning and sing spur-of-the-moment carols.

I don't usually post photos of just Shawn and I, but this was a cute one someone took at Thanksgiving.

Wednesday, November 29, 2006

More Tears Today

This time, tears of joy. We had our Level 2 ultrasound today. All looked well. The perinatalogist detected no fetal abnormalities. Of course, not everything can be seen on an ultrasound, but from what she could see, the major organs, structures, etc. look great. We are still scheduled for a fetal echocardiogram next month just to cross our T's. As the doctor explained, right now at 18 weeks, the baby's heart is the size of the tip of your pinkie finger. In another four weeks, it will be the size of a quarter. Clare's heart defects were not detected through the ultrasound, so one more test just to be sure!

We have also officially retired the sweet name of "Jelly Bean" and have moved on. So introducing....

Simon Joseph

Monday, November 27, 2006


I have been a tad emotional these past couple days. I want to blame it on hormones and a bad head cold, but it's really because I have become a wimpy mush since becoming a mother, especially a mother to a special needs child. I know I have always been a compassionate person, but it gives you a new perspective when you see another human being and think "that could be my child." I can get downright weepy when I see the boy with Downs syndrome cleaning the tables at Wendy's.

We received our copy of the Williams Syndrome Association's newsletter this weekend. There was a beautiful letter written by a 12-year old girl talking about her 7-year old brother with WS. She states that even though he cannot walk, talk, or eat, she thinks he is absolutely perfect. There were two tributes from the parents of children who passed away this year (one girl was 16, and the other boy was only 9 months old). It took me two days to read the newsletter because I kept having to put it down and take a break or else I would lose it. I picked up my latest issue of "Parenting" instead (nothing has ever made me cry in that and, many times, I laugh at the magazine and the problems those parents need solved - it's a wonderful diversion to read about how to get rid of your baby's hiccups). And there was a heart-stirring article about open-ended adoption that got me started crying all over again. (For those that do not know, my then-teenaged younger sister courageously gave her baby up for adoption nine years ago.) All this while spending a wonderful four-day weekend with my three sweeties getting our house decorated for Christmas made me very weepy indeed.

Today, my thoughts and prayers are especially with another little member of our WS community. During a "routine" cath, this 2 1/2-year old's heart stopped. He was resuscitated, but his heart stopped twice more, he was placed on life-support, underwent open heart surgery, developed double pneumonia, and sometime during all this he also suffered a stroke. He is in week two of being in the ICU. My heart goes out to Gage and his parents during this difficult time.

It's hard to read and know all this. I want to know about these risks because I do not want to be in denial about how serious Clare's syndrome and heart condition can be. At the same time, I know that there are many more children with WS who are thriving in many aspects of their lives. The reality check can be hard sometimes. And, finally, my friend Nancy's blog just got me completely. She shares a beautiful story and video about a father and his disabled son who saved each other's lives. You have to check it out, but be sure you have the tissues nearby. Her blog is at: under the post entitled "CAN." Thank you for sharing that, Nancy. I hope I am all out of tears, at least for tonight.

I Love These Days...

S~Okay, I know I haven't written in a while but I thought it was time I chimed in. I know Teresa has said many times how fall and early winter is our favorite time of year. It could be because there are so many fun things to do! With trick-or-treating, Thanksgiving dinner, and then the whole Christmas build-up. We are big Christmas people, and I always look forward to the weekend after Thanksgiving when we put up our Christmas tree and decorate the house. There is nothing more cozy than a house at Christmas time. I love these days!

And apparently so does Jamie. He was such a big helper this year - helping me with the branches on the tree and helping me string the lights. By the time we got to hanging ornaments, he was a Christmas tree expert. The cute thing was he kept telling me how he loves these days - when we put up Christmas trees, he really loves that, it's his favorite. Then once the tree was finished, we broke out the eggnog and the holiday oreos. Jamie's remark: "Daddy, I just love these days when we eat oreos and drink eggnog."

I think even Clare loves these days, or at least she loves the soft St. Joseph from the kids' nativity set (she takes after her old man after all). Clare was mesmerized by all the lights on the tree and just sat watching it.

After the kids were in bed, I sat in the living room with all the lights out, except for the Christmas tree, and thought how much I love these days. Not just the days leading up to Christmas, but the days when my son wants to help me with everything I do, and my daughter is content to give everything a big old squishy hug.

Fifteen Minutes

Yes, this was absolutely worth the fifteen minutes of peace, relative quiet, and reading time Shawn and I got in the living room the other night.

P.S. Okay, I had to add this because of all the comments I received! Yes, I used to sell Tupperware....

Sunday, November 26, 2006

Moving Forward

The time has come to move on. I’ve been blogging faithfully for almost a year and a half now. It has been very therapeutic for me, plus gives me a chance to update those around the country (and even a few followers internationally!) on how Clare and our family is doing. But lately I’ve been questioning the need to blog anymore. No need to fear – I will continue! But it is time to move forward.

We originally titled this blog “Clare’s Journey,” but it has really been about our entire family’s journey through this confusing, often times scary, but frequently wonderful, world of Williams syndrome. I needed this blog during those early months. I have always enjoyed writing, but was never good at keeping a diary. Blogging, however, came naturally. I have always been the kind of person that when I am angry or upset, just the simple act of writing it out makes me feel better. If I am irked at something a friend has done, I will type them an e-mail. Then I will delete it because I feel so much better just having the words written down, and I can move on without holding that grudge. Maybe I should be braver and confront people sometimes, but that’s not how I function. So being able to share my thoughts and feelings during Clare’s days of diagnoses, tests, caths, and surgery gave me a release for all that emotion. And I believe it made me a stronger person because I wasn’t bottling it all up inside.

In some ways, I know I still need this blog because our journey isn’t over. Williams syndrome is not a chapter in our life that will ever end. What we worry about with respect to Clare having WS will change, but there will always be something. However, it is time to move past that as my sole reason for blogging. Another WS parent made the comment a while back that having their third child (their second had WS) “normalized” their family again. It sounded kind of weird at the time, but being pregnant again, I can see that. I am sure a large part of this is due to the fact that Clare’s medical worries have slowed down. We’re not in that crisis mode anymore. But I am also getting past the whole WS aspect of who Clare is and seeing all the other things she is as well. Williams syndrome will always be a part of our life, but it’s not the focus of our life. I know there is no law about what I can and can’t write about. However, before, I felt that this blog was for and about Clare and that was it. I don’t feel that way anymore. Now I know it is for me and my whole family. I’ll still call it “Clare’s Journey,” but it’s not just her journey – it’s our journey.

So maybe I will blog less often, but trust me, I will keep it up (at least for now – who knows when that infamous Jelly Bean comes along!).And now we will most likely hear more about what Mr. James is up to as well as Miss Clare since in our daily life, he is every bit a part of it. He’s kind of an in-your-face kid! I hope the blog is still readable and enjoyable. Tears and drama sell so much better, but I am happy to let that stuff go, even if it makes us boring!

Sunday, November 19, 2006

Howdy, Pardner

All are glad that Daddy is home safe and sound. We had a great day as a family on Friday. My sister Erin was still here, so we took the kids to Chuck E. Cheese after Clare slept off her anesthesia. As Clare gets older, she can shake off the effects of the anesthesia much more quickly, which is great for all involved! A 3-hour nap post-echo did the trick.

We had a nice, lazy weekend. Lazy by my standards because we had nothing scheduled, nowhere to go, nobody to meet. Probably not lazy by Shawn's standards since we raked the front and back yards in those two days. Clare and I (almost) finished up our Christmas shopping while the boys cleaned the gutters. I guess I can see what Shawn was complaining about!

If you couldn't guess, this is the sheriff and his deputy, courtesy of our Texas-traveling dad. I called Jamie "Cowboy Bob," and he corrected me, "I'm not Cowboy Bob, I'm the Sherf." Sherf? He kept referring to himself as "Sherf." It took me a few minutes to figure out that he meant "Sheriff." And as he told me, Clare is his deputy. Poor Clare - she will always just be the deputy in their game-playing!

Friday, November 17, 2006

Echocardiogram #14

Clare had her sedated echo this morning. Shawn arrived home after midnight last night from his business trip in Houston, and the three of us trooped out of our house in the rain at the crack of dawn this morning to the clinic. Erin came and stayed with Jamie, so thankfully they were still sleeping peacefully when we left this morning.

Clare, as usual, was a trooper. Since we were at the clinic by 6:30am, she was still groggy from being woken up and had not realized that she missed her breakfast, which was a blessing. So she wasn't too fussy during the pre-echo procedures, and she willingly let the anesthesiologist take her from us and walk away with her. After the echo, her cardiologist came out to talk to us while Clare was waking up from the anesthesia. Clare's heart is still fairly unchanged since her last echo 5 months ago. Yippee! Her vessels have not grown too much, but that is not a surprise since Clare herself has not grown too much. Her blood pressures are higher, even being sedated, so the cardiologist is doubling her Propranolol dose (blood pressure meds). That was kind of a bummer since we've been hopeful Clare could eventually be weaned off her Propranolol. However, she has not had a dose increase since she first started on it post-surgery a year ago, so an increase in dose should not be a real surprise, it's just in the wrong direction we had hoped for! The portion of her aorta that was surgically repaired still looks fantastic and wide open. Clare does have a little more leaking in her aortic valve, but again, it's something she's had all along and they are keeping an eye on it. The biggest change was that Clare's right-sided pressures have gone up from a 45 gradient last echo to 55-60 this echo. The cardiologist wants to see Clare for another sedated echo around her 2nd birthday. At that time, if Clare's right-sided pressures have continued to increase like they did this time, then she is most likely headed back for another cath to relieve some of that pressure. We are going to have a follow-up next week for an EKG to be sure the conduction system in Clare's heart is tolerating her Propranolol increase.

We are relieved to have another echo behind us! I consider the news good because the rapid narrowing in Clare's vessels have slowed down considerably from last year. We get to have another 4-5 months between echos, and if there is a cath in Clare's future, it most likely won't be until after her second birthday. All good stuff!

Wednesday, November 15, 2006

Wasting Time

Yeah, I'm just playing online until "Bones" starts at 8pm. Sad, but true. I was up until almost midnight last night researching preschools for Jamie (I can't believe we've hit this stage in our life already!), so tonight, Jamie and Clare went to bed early, and I am going to veg. But if I sit in front of the TV too early, I will fall asleep in the middle of "Bones." And we can't have that.

The kids were both finally feeling better today. Jamie, the fish, had his swim class, which he absolutely loves. I thought it would be great because getting-bigger-every-day Mommy doesn't have to get in her bathing suit since Jamie is now proficient enough to be in the water by himself, and Clare doesn't get stuck in the exersaucer in the childcare room. However, Clare does not think it is fair that Jamie gets to be in the pool and not her, so I spend most of the swim class with one eye on Jamie (even though his teacher is great and very observant, you never know!) while trying to keep Clare entertained. It was 100 degrees in the pool room. Great for when you're practically naked, but not so good when you're fully clothed (and clothed for the wet, chilly weather we've been having). Clare, who is usually cold, was red-faced and sweating. Her hair was so damp she had little ringlets everywhere.

Part of my wasting time was going through my digital photos. So I had to share Clare after her bath (which she loves), Jamie playing knights (that's his helmet and arm protectors he told me - I didn't have the heart to tell him that was his hood and sleeves that I unzipped from his winter coat), and Jamie and Clare loving each other. I've said before that Clare is the biggest hugger these days, and she loves her big brother so much. Shawn was trying to take some photos of me with the kids, but Clare was more interested in hugging Jamie.
Oh... gotta go... it's 7:57pm.

Tuesday, November 14, 2006


We've been blog AWOL lately. Shawn is away for the week on business, so I am the single mom around here. (Amy - I swear, I don't know how you do it!) We are surviving so far. At least the kids are eating and sleeping! Shawn and I always joke that whenever he goes away, one of the kids is either sick or teething. Well, this week, it is both (both sick, just one teething). Clare has been drooling up a storm again lately, so I think something is working its way through in her little mouth. Plus she's been under the weather with a cold (pretty bad on Saturday, but much better now). Then on Monday, Jamie had a high fever and was not his usual energetic self. Put it this way, he voluntarily took a nap, something that hasn't happened for months. Thankfully, other than some congestion, I have escaped the bugs going around so far. Just excusing our absence here! Shawn returns super-late Thursday night (technically on Friday morning), and Friday is Clare's sedated echo. So I will definitely be posting sometime on Friday. I have to admit as Friday draws closer, I am getting more nervous about this echo. Clare has gone so long without any intervention that I dread that time's up. Especially since tonight, as I was getting her in her pj's, I noticed her feet were purplish. We haven't seen that in a long time. When I pushed in on her sole, it never profused back - just a big white thumbprint. It could be that the colder weather is hitting, and her feet were just chilly. But they didn't feel that cold, and I fear it is something more.

Wednesday, November 08, 2006

One Year and Feeling Great

Another milestone today – a year ago was Clare’s open heart surgery. I wanted to write something inspiring, meaningful, insightful, but I admit I am so wiped these past couple of days that my brain is in a fog. I have been plagued with terrible migraines and now seem to be coming down with some cold-thing. Oh, I love winter.

A couple nights ago, I popped in our family video tape. Coincidentally, it was cued up to right before Clare’s surgery in November 2005. She was seven months old and Jamie was a little over 2 ½. They both were such little babies back then. Shawn and I were transfixed watching a tiny piece of our life from last year. In the video, we laughed and joked and played around. Clare was mostly in the swing or her bouncy seat, throwing tiny smiles to the camera every now and then, but mainly just staring at us wide-eyed. Jamie, as usual, was a crazy, silly goofball bouncing all over the place. We were such a peaceful, happy, normal family. It’s nice to remember us that way. Of course, we mentioned that Clare was going in for surgery, but then the tape jumps to November 18th, as if the 12 horrible days prior had never happened. There was Clare again - in her swing, looking exactly the same, our sweet, happy girl. In many ways, it's nice to have that version of our life. To remember that amidst all that pain, suffering, worry, anxiety, fear, and doubt, we had many joyful moments. Moments where all that other stuff didn't even matter. As I sit here typing this, Clare is rolling around on the office floor behind me getting into who-knows-what of Daddy's work stuff. And I thank God for that precious child. A year later, I am thankful for what we've been through and what we've learned about each other, ourselves, and life through these experiences. I am thankful God gave us the strength, courage, hope, faith, and patience to get through those days last November. And I am thankful they are over.

Saturday, November 04, 2006

To Know or Not To Know

Being pregnant and already having a child with heart defects, we have been doing much thinking in our house about how far we want to go with testing in this pregnancy. Other than the normal ultrasound, we had no testing done on either Jamie or Clare (not that it would have mattered with Clare because the typical genetic tests do not include Williams syndrome, plus her heart defects could not be seen on the ultrasound). As I mentioned earlier, we had already decided to decline any testing through blood samples, amniocentesis, or CVS. However, when my OB brought up undergoing a Level 2 ultrasound (a more detailed ultrasound, which will be done by a perinatologist, who is trained in detecting fetal abnormalities using ultrasound) and fetal echocardiogram, it did make us pause. To make a long story short, we are going forward with these two tests, especially since they are non-invasive tests (unlike an amnio, which poses a risk to mother and baby). However, I still have mixed feelings on this.

Part of me is of the same opinion that what is the point to these tests? That is my feeling on the other testing offered. It would not affect my pregnancy, except make me more nervous and stressed! I don't buy into the argument that finding out prior to birth if your child has a genetic problem can help the parents prepare for having that child. I do not think anything can prepare you for that. It's like reading all the parenting books while you're pregnant - sure, you may get ideas for what you like and don't like, but you have no idea what your child is going to be like. A thousand books cannot prepare you adequately for the reality of parenthood. And just the fact of knowing your child has special needs cannot prepare you for the reality of dealing with those needs. If I had known Clare had WS while still pregnant, those would just have been words to me. I wouldn't have known that Clare would have no feeding or calcium issues in infancy (thank goodness), but would be on the severe end for heart defects. How could I predict that at 19 months old, she would not be crawling, but is starting to say words. I just don't know if I want to know if there is something wrong with my baby. Our chances of having another child with heart defects is so slim, but whoever thought we would be that 1 in 7,500 (or 20,000 depending on the study) that we would have a child with Williams syndrome? I certainly never expected it. That always happens to someone else, not you.

I discussed this a while ago with a friend who a few months ago found out her baby in utero may have heart defects and that there was a possibility the baby only had a 50% chance of survival to term. (She has since given birth to her miracle baby - you can read their story at, if you're interested.) Naturally, we talked about what they were going through and what we have gone through. Not that I would wish this on anyone, but she is the first person I know (and knew prior to having Clare and not meeting her because of Clare) to go through the same scares and emotions that we have gone through, so it was nice to have someone to talk to about it. Watching their emotional roller coaster these last few months made me appreciate that I didn't know about Clare's diagnosis while pregnant. In many ways, I was cheated out of Clare's babyhood. That first year of life that should have so much joy in it while watching your child grow was not the same for us. I am thankful I was not cheated out of having a normal, happy, fairly stress-free pregnancy.

But to wrap this long story up, we are going to have the ultrasound and echo. I guess, if anything, if everything looks normal, at least there is that peace of mind. Like I said, I am still on the fence about the whole thing. Maybe because I do have that teensy tiny itsy bitsy little piece of fear in me that they will find something. But you know what? If they do, we will deal with that as it comes, just like we have done and still do with Clare.

(So the photos have nothing to do with the post, but they were too funny not to share. This was Shawn and Jamie's "surprise" to me one night before bed. Clare thought it was hysterical, too. She laughs more often now and was cackling and flapping her "wings" the entire time she was flying around. The costume is from one of Jamie's Build-A-Bears. She actually looks big in something!)

Wednesday, November 01, 2006


Last year was full of tricks, and this year was full of treats. Halloween night was almost balmy here (really!), so even Clare enjoyed trick-or-treating. It could have been 40 below and Jamie would still have been raring to go. He totally understood the whole concept this year and was running ahead to the houses ready to get his candy. When Shawn asked him if he was done, he said, "Oh no, Dad, I love trick-or-treating!" It was a treat for us to go with him because last year, he went with his grandparents and cousins since we were in the hospital with Clare for her third cath. Clare may not have understood trick-or-treating, but she understands about mini M&M's, her new favorite candy.

Jamie and Clare dressed up for the All Saints Day parade at church this past weekend. Jamie went as St. Michael the Archangel (which he was super-excited about because that meant he got to wear wings AND carry a sword) and Clare went as (of course) St. Clare of Assisi. With the help of my friend Michelle and her sewing machine (thank you!), their costumes were so cute. Jamie loved every minute of it. We had previously talked about St. Michael with him and who he was. We basically told Jamie that St. Michael is an angel who fights the bad guys for God. (I think Jamie's still a bit young to get into the whole Satan thing with him!) He wanted to know if he was allowed to fight bad guys in church. It's a real example of nature v. nurture. We do not do anything to promote fighting, violence, weapons, etc. (obviously) and yet Jamie loves fighting. All the toys in the house fight each other, even Clare's sweet, girly pink and purple stuffed animals. It really goes to show that boys will be boys no matter what you do.

Poor Clare had to get two shots today. (The tricks came the day after Halloween!) It was the first round of the Synagis shots. And she has hit the magic number weight-wise where the dose cannot be put into one shot, but has to be in two. Let's just say, she was very unhappy. I was disappointed that her GI appointment was cancelled because the doctor was sick. As Jamie put it, "The doctor is sick? He can't be sick - he's the doctor!" We could have rescheduled for next week, but Clare has seen enough doctors in the last couple weeks (and she has her sedated echo in two weeks). I decided to wait until the beginning of next month when she has her next Synagis shots scheduled. Get it all done in one trip is my philosophy.

We had a couple beautiful days lately, but this morning, there was frost on the ground and ice on the car. We all had to get out of the house early to help out some friends, so it was the first morning I got to scrape the windows. Brrrrr. Now it's time to rake leaves before the snow comes!

Sunday, October 29, 2006

Some Moments

Lately, I've been feeling pretty good Clare-wise. We have been dealing with her delay in gross motor skills, which can be frustrating, as well as some eating issues, but other than that, I've had very few "this isn't fair" moments. (There were MANY of those in the weeks and months following Clare's diagnosis!) However, I did have one hit me the other day.

We went to a Halloween party. The other kids were from Jamie's playgroup from when he was a toddler. Now there are younger siblings as well, so there were nine little ones ages 3 and under at the party. Clare was not the youngest, but she is the only one who is not mobile. She seemed to have fun, but didn't really seem to get what was going on. She did not get to participate in any of the activities (other than eating pizza and donuts), but I think she enjoyed watching (if watching intently and smiling means having fun). We lined all the costumed kids up to take a group photo in the living room (much easier said than done!). After all the craziness and sitting still, the kids decided they were done with taking photos, and they all scattered. I was in the kitchen by this point. When I saw all the kids streaking by, I went back into the living room, and there was Clare. Sitting on the floor all by herself in a big, empty room, when before she had been surrounded by friends. She just looked up at me and raised her hands up to me. My heart broke just a tad bit more in that moment. Those are the moments that catch me unaware. I think I'm doing good and accepting all this, and then it just all gets to me again. I know Clare is not always shut out or set apart or different, and I know that this happens to all children at one time or another, but it is still so incredibly tough on a mother to see. Maybe because I KNOW without a doubt that Clare will have these moments in the future. They are inevitable. One of the saddest things I saw on the videos we watched about Williams syndrome is that the older individuals know they are different. They talk about how it is hard to make friends or fit in. They may not be considered smart or intelligent by typical standards, but they are definitely smart enough to know what's going on. And I wish I could shield her from all that. We have this gorgeous, happy, little girl, and I do not want her to know any of that fear or pain or feelings of being different that I know she is going to experience later in life.

I'm a happy-ending kind of girl, and this story does have a happy ending. Just as I was stepping close to Clare to pick her up, we were once again surrounded by a bevy of kids. Instantly, they were all over Clare. She was kissed and hugged and squeezed. Clare basked in her shower of love, and I finally had to step in and rescue her before she got squashed too much. Because she IS loved, and that's also important. The children may be young, but they know that Clare is something special, and they love her. We all do.

Tuesday, October 24, 2006

Barenaked Fun

Shawn and I went to the Barenaked Ladies concert last night. They are my favorite group, hands-down, no contest, without a doubt. The last time we saw Barenaked Ladies in concert was 2 1/2 years ago (which, in married with children time, is a long time, considering I wasn't even pregnant with Clare yet), so I was in need of a fix. Without boring all you non-fans with the details of the concert, let's just say it was fabulous. Shawn and I had a great time. We got spur-of-the-moment tickets and still ended up with good seats. It's been a while since we've had a date night, and especially since we've done something other than go out to dinner. Our anniversary is in three weeks, but Shawn will be in Houston over it, so this was an early anniversary present. Shawn's mom spent the night to stay with Jamie and Clare, so they got a treat, too, having Mimi around. Even though I am now functioning on very little sleep (it's been a long time since this mommy has been up until midnight), last night was awesome.

And speaking of seeing barenaked people, we had our ultrasound this afternoon. We brought our entourage since Jamie, Clare, and Shawn's mom came with us to see Jelly Bean do his/her dance on the screen. It's still very early, but everything looked good so far and the baby's measurements are right on track with my due date in May. Six months and counting!

Saturday, October 21, 2006

Boo at the Zoo

I love Halloween. As I've said over and over, fall is my favorite time of year and not just because of Halloween. Last weekend, we went with Shawn's family to an apple orchard for apple picking, pumpkin picking, a hay maze, and fabulous pumpkin whoopie pies. It was an awesome day, the weather was beautiful, and we got some great photos.

But I do love Halloween! As kids, my sisters and I were not allowed to go trick-or-treating that often. Instead we always went to a fabulous (from what I can remember) All Saints' Day party at our church and dressed up like saints. So we got the costumes and the candy after all. As we got older, our costumes became more creative. (You have to spice up all those nun's habits somehow!) My favorite was the year I was St. Lucy - she is the patron saint of eye problems and is depicted as holding a pair of eyeballs on a plate, since she died a martyr and the legend states that she had her eyeballs plucked out. Sure enough, my dad sculpted me two Playdoh eyeballs for the plate I carried around. Hey, even Catholics can have some gory costumes!

It's been fun re-living Halloween through our kids. Jamie is now old enough that he wants to choose his costume, but Clare we still have control over! Jamie's pick was easy this year - a pirate. He has all the gear (he just asked us to get him a hook because how can he be Captain Hook without a hook?), and Shawn cleverly put together a costume with ordinary clothes. Originally, Clare was going to be a jaguar. I couldn't think of anything I wanted her to be, and she had a jaguar costume that someone gave us as a gift when she was born. However, when we were in Target one day, I saw the cutest little girl pirate costume. Not wanting to step on Jamie's toes, however, I asked him if it was okay if Clare was a pirate, too. His answer (one of the gazillion reasons I love this boy!): "Of course. I need a Mr. Smeed." If you're not familiar with the pirate lingo, here is the definition of "Smeed" from the Unword Dictionary:

"Smeed : smēd)
1. (n.) A nickname for one's cohort; Sidekick; Right-hand man.
Origins: From old pirate stories. Smeed has often been the name for a captain's sidekick. The name was used primarily in the tale of Peter Pan. In the story, Captain Hook's sidekick was named Mr. Smeed."

There you go! Our pirate duo is adorable. Even Clare has the pirate "arrrrr" down pat. This weekend, we took the kids to Boo at the Zoo. One of the other great memberships we purchased this year was to the nearest zoo. Not only does it work at that zoo, but at the zoo in Boston and the zoo in RI, near my family. So we got lots of use out of our zoo membership this year. Jamie was super excited about Boo at the Zoo, since it was our first official Halloween festivity where he dressed in his costume. I was all for bringing the costumes with us and changing the kids into them at the zoo. Jamie, however, wanted to wear his costume from the moment he woke up in the morning. As Shawn got him dressed, he said, "Oh, Dad, I am going to love being a pirate." How could I not give in? Although it was a tad on the windy side, Jamie and Clare had fun at the zoo. We looked at all the animals, then went down the trick-or-treat trail, Jamie got a turn in the bouncy house, and then we did the costume contest. Jamie and Clare did not win (I think the judges were blind), but it was fun nonetheless. Jamie and Clare got some candy (but not too much, which I thought was good since the actual Halloween is still around the corner) and other treats. All in all, it was a good day.

Thursday, October 19, 2006

Grocery Store Queen

Clare and I went grocery shopping today. Jamie was playing at a friend's house, and I was looking forward to a couple hours of rest after a long morning. However, Clare thought 30 minutes was an acceptable length for her nap. She was still tired and somewhat grumpy, so we headed off to the grocery store. I hoped it would be a diversion and it's easier to go grocery shopping with Clare strapped into the cart as opposed to with a dawdling preschooler as well. I did worry a little over how long this trip would last due to Clare's mood.

Well, wasn't she just the happiest little camper! She sat in the cart like she was the queen and waved at everyone. Big "hi's" and smiles graced upon our fellow shoppers. Clare loves to wave and say "hi," but this was the first time she had done it out in public... loudly... to everyone. It got a smile out of each person we came across. From the young guy shopping in the produce department to the older lady in the meat section. One woman came up and said, "Thank you - that was the best smile I have gotten in a long time." It was heart-warming to see my little social butterfly starting to bloom!

First Introduction

I had my first OB appointment today. After weeks of waiting, I am almost out of my first trimester. (Is it technically 12 weeks or 13 weeks? No matter which, as long as my stomach gets the memo, I will be happy.) For some unexplained reason, all of our unborn babies have been graced with candy shoppe nicknames until we found out if they were boys or girls (yes, we are finder-outers!). Jamie was Fudge, Clare was Skittle, and this little one is Jelly Bean.

In my past pregnancies, the OB cannot find the heartbeat at 12 weeks. With Jamie’s pregnancy, I laid on the table with my stomach in knots while the OB ran the Doppler over my belly. No heartbeat, no heartbeat. Having miscarried my first pregnancy, this was agony. Finally the OB (who, luckily for him, I cannot remember which one he was, but I do remember he was male) said cheerfully, “Well, can’t find the heartbeat, but maybe the baby is small. Come back in 4 weeks and we will try again.” Not knowing what else to do, I straightened my clothes and left the office. To wait four more endless, painful weeks wondering if my baby was alive or not. We all know how the story turned out (because I have this amazing, crazy 3½ year old!), but I smartened up since that experience. I found my favorite OB at the clinic (she delivered both Jamie and Clare – Jamie by chance of the on-call schedule, Clare by choice since I was induced). At my first appointment during Clare’s pregnancy, she could not find the heartbeat. She explained that I had a retroverted uterus – not uncommon and not a problem since it corrected itself once the baby got bigger. But it meant the baby was at the back of my uterus, at the back of my body, too small and too far away for the Doppler to pick up the heartbeat. So she ordered an ultrasound for that afternoon. Sure enough, we got to see Clare (or Skittle, as she was known then) dancing around on screen with her heart beating.

So, this time, when the moment of truth came, my OB remembered about the heartbeat. She said it was a challenge now for her to find it at 12 weeks. After maybe 30 seconds of moving the Doppler around, there it was – the sound of galloping horses, a solid, steady 170 beats per minute. Very cool for someone who has never heard her baby’s heartbeat this early. There is nothing like hearing that sound for the first time in your pregnancy. Finally, a confirmation (other than a faint pink line that I always question if it’s really there) that there really is a tiny human being living inside you. You’re not just sick and getting fat for nothing! Absolutely amazing.

We naturally discussed Clare – one, because she was there and is just so adorable that you can’t help talking about her! But also, obviously, because of her medical and genetic history. Shawn and I declined having any testing done whatsoever. All those numerous screenings for things such as Downs syndrome, cystic fibrosis, etc. I have never done any of that testing. One, because it would not alter the course of the pregnancy for us, and two, because there are many false positives. But if you’re positive, I would be encouraged to have CVS testing or amniocentesis, which is too invasive in my opinion and carries a risk of inducing miscarriage. And, again, regardless of the results, it would not change our decisions regarding pregnancy. Of course, I want my baby to be healthy, but if he/she is not, I also know it’s not the end of the world. We are, however, having a fetal echocardiogram done around 22-23 weeks. Although Clare’s heart defects are 99.99% related to her having Williams syndrome, there are cases of children having the same heart defects and not having WS. And since both Jamie and Clare have a congenital defect (Jamie was born without a thyroid gland), there may be a good possibility we have another child born with a congenital defect. The fetal echo is similar to what Clare goes through with her echos (although I won’t be sedated because I promised to be a good girl and lay very still) – completely non-invasive, no risk to me or the baby. We also get our first ultrasound next week to confirm my due date. I am very excited to see Jelly Bean on screen!

Wednesday, October 18, 2006

Identity Crisis

I took Jamie and Clare to our local Children's Museum today. We have a membership there, but it's been a while since we've gone, having spent the nice weather days outside. Since it was raining this morning on our way to swim class, I told Jamie we would go to the Children's Museum after swim. Even though the sun came out later, Jamie was still all for the museum. We initially received a membership courtesy of my dad last year. It came in handy countless times during Clare's hospitalizations since the membership got us into the Boston Children's Museum for free as well. Jamie's routine during Clare's caths was that one (or both) of my sisters would take him to the museum while the rest of the family did the hospital vigil. So today, on the way to the museum, Jamie started talking about going to the big museum with Auntie Erin and Auntie Chrissy. He asked when they were going to do that again. Our conversation brought back all those hospital memories.

This is our year of first anniversaries, and the big one is coming up in less than 3 weeks - the first anniversary of Clare's open heart surgery. It's hard to believe a year has gone by already. As I was driving down to the museum today, I was overwhelmed with the memories of the sights, smells, and sounds of Hospital Land. We lived and breathed Hospital Land for so long that now that we've been out of it for almost eight months, I miss it. Yes, I actually miss it. There was something so familiar about the routine (sad, though, that it became routine). I miss the hospital food, which actually was quite tasty unless you had to eat it for two weeks straight. I miss walking the halls from our room to the playroom to the computer room to the elevator to the little kitchen which was always stocked with pudding, graham crackers, and Sprite. I miss the comfort of knowing that Clare was hooked up to a gazillion monitors so we always knew exactly what was going on in her heart. I know this sounds strange, warped, or maybe just hormonal, but does this sound familiar to anyone out there with kids who have undergone multiple hospitalizations? I feel like I am having an identity crisis. Sometimes I look back at last year and think, was that really us? Did we really go through that? Because usually in our day-to-day living, I don't think about it at all. I remember those feelings in the first few weeks after Clare's diagnosis, but before she started having caths - I would forget about her heart defects and Williams Syndrome, until the phone rang from the doctor's office. Lately, I've been in that little pretend world again, probably because we were doctor-free for the majority of the summer. Which is a nice place to be sometimes! I forget about all that worry, anxiety, and restless pacing of last year. So why do I miss it? I have no idea. I have to think it's that same phenomenon that happens to people who are sick for so long or live with a disability for so long, that when it is corrected or healed, they feel like they have lost their identity. I used to wear glasses and contacts. I had the absolute worst vision. Almost 6 years ago, I had Lasik surgery done on my eyes and have been corrective lenses-free since then. But for those first weeks and months after my surgery, I still reached for my glasses every morning. I thought it was so weird that I could see clearly by just opening my eyes. I missed my routine of cleaning my contacts. Bad eyesight was just such a part of me that once it was gone, I felt like I was missing something. That's what I relate this to. Clare's hospitalizations were such a part of her first year of life that once they were over, it felt like something was missing.

This IS NOT my identity. This IS NOT Clare's identity. But it did define us for a little while. Or at least was a huge part of who we were and how we lived. I am hopeful that that part of our life and especially Clare's life is over for now. I know Clare's heart procedures aren't over (especially with the dreaded sedated echo looming in a few weeks), but I am hopeful that we're over the worst of it.

Tuesday, October 17, 2006

Beginning Physical Therapy

Clare had her first physical therapy session yesterday. We met Kelly again, who was the PT for Clare’s evaluation this summer. Clare will have one hour of PT every other week. Kelly’s schedule isn’t set yet, so we don’t have a definite hour scheduled right now, but hopefully we will soon. In the meantime, we’ll work on a week-by-week basis.

Clare liked Kelly right away, and they went right to work. Clare lasted a little over half of the session, but worked very hard during those 35-40 minutes, so she was exhausted when done. Kelly mainly concentrated on getting Clare through transitions – from laying to sitting and sitting to standing. Clare does not transition at all independently, so Kelly showed me some techniques for helping Clare that we can work on during the week. I am hopeful that PT will give Clare that extra boost towards crawling and walking.

During Clare’s PT session, Shawn and I did get an eye opener into something else going on at home. Jamie, of course, is around during Clare’s sessions, and he usually wants to be right in the middle of everything. During Clare’s OT, Jamie and I often stay in the kitchen (within earshot and eyesight so I can get an idea of what Clare is working on), but it allows Jamie to have some special one-on-one time with me. When we go to the sensory room at Easter Seals, there is plenty to keep Jamie occupied. This session, however, both Shawn and I wanted to watch the session so we could see what PT was all about. Jamie was fascinated by Kelly’s equipment, big bag of balls, and new toys. He wanted to touch everything. A number of times, Shawn or I had to tell him to let Kelly play with Clare. Finally, Shawn brought him out of the room to talk to him. He explained that Kelly was here to help Clare with her boo-boos so she can learn to crawl and walk. Shawn admits it was the wrong choice of words because Jamie started crying. He had boo-boos, too, he told Shawn. He had three boo-boos, more than Clare did (pointing out his three cat scratches on his hand where Jack surprised him the other night), so he needed to play with the toys, too.

I am not surprised that Jamie is sorting through these feelings. He still remembers Clare's hospital stays. When we went to the zoo, he wanted to buy this loud crocodile toy, which we steered him away from. Partly because it was expensive, partly because it was annoying, but also because it scared Clare. A couple weeks later, Jamie asked me when Clare was going back to the hospital so he could have that toy. He explained to me that if Clare was not at home, then she wouldn't be scared by the crocodile. We do everything we can so Jamie knows he is every bit as special and important as Clare. I think that, in many ways, we go overboard sometimes with Jamie to compensate what he misses out on because of Clare sometimes. Not like it's really that much, but it's hard for him to understand why we can't do something because Clare has to go to the doctor or has therapy or needs a nap. Or that certain things scare Clare more so than other children. Part of it is the adjustment of having a sibling as well. I think it's a good lesson for Jamie in many ways that the world doesn't revolve around him and there are other people to consider. But sometimes it's also just one more thing that's not fair about having a child with special needs. There's my pity party for the day!

In other news, Clare has her first Synagis shot (the RSV-antibody) scheduled for November 1. The clinic is awaiting insurance company approval still, but Clare’s cardiologist recommends the shot for Clare as well as her pediatrician, so we’re hoping approval will be granted. The shots start up in a couple weeks, and Clare will receive one every 28 days until April. The dose of the shot is according to weight. Last year, Clare was just under the threshold for the dose being put into one shot. This year, I fear that Clare will get two shots per visit. One of the cons of gaining weight! Clare has her GI appointment right before the shot (one of the perks of having all of Clare’s doctor’s in one location), so we’ll see what he has to say. Shawn and I both feel that Clare does not eat a lot. She loves to drink milk and will drink and drink, but just picks at her meals lately.

Clare also has her sedated echo scheduled for November 17. Originally, her cardiologist wanted an echo in late October/early November. When the clinic called to schedule it, however, the earliest they could get Clare in was December 15. Since she requires anesthesia for her echos, she has to have them performed in the ambulatory surgical center at our clinic, which is a tight schedule. When I was told the December date, I asked the receptionist to please double-check with the cardiologist if that date was okay because it was six weeks past when she wanted to see Clare. Sure enough, we got a call a couple days later that they were able to squeeze Clare in on November 17. I guess the cardiologist didn’t want to wait that long! Of course, it is a 6:30am time slot and Shawn is in Houston on business all that week. Thankfully, my sister Erin is able to come down the night before so she can stay with Jamie while we go, and Shawn’s boss is letting Shawn leave a day early, so he can be here for the echo.

I knew fall was going to be a busy time for doctor’s appointments. But I would rather get them over with and enjoy the holiday season!

Tuesday, October 10, 2006


We don't often get a photo of the four of us, for obvious reasons. My mom and aunt Sara came to visit this weekend, and my mom always insists on taking a photo of the family before she leaves. I tease her about it and we groan and roll our eyes, but I have to admit that she has gotten some great photos over the years, and without them, we would have very few photos of all of us. So, thank you, Mom! (Actually, the photographer in this case was Sara, but Mom did orchestrate the sitting!)

Monday, October 09, 2006

Good Day, Bad Night

It was a good day. The weather here was GORGEOUS. Almost too hot for long pants! The kids and I headed over to the nearby playground this morning. Jamie ran around like a loon, and Clare took some trips down the slide and went in the swing. Then we took a walk around the pond next to the playground. It's about a mile through the woods and stunning this time of year with the leaves turning colors. We often walked this trail as a family in the evenings this past summer, but this was the first time I did it by myself with Jamie and Clare. In the double stroller. Jamie claimed he needed a break from running around and wanted to have a snack, so I agreed to pull out the double stroller. Besides, I have been so off my feet with everyday, all day, no matter what time it is pregnancy sickness that I could stand to get the exercise. What I didn't figure was how much exercise I was going to get. With a toddler, preschooler, and a 20-pound stroller, I was soon pushing 80 pounds up and down hills, around curves, over leaves, twigs, and rocks. Needless to say, I definitely got a work-out! But we are savoring every last minute of fine weather around here, so I won't complain too much!

This afternoon continued our idyllic day. Clare took a nap, Jamie did his quiet time, I got my nap. Jamie and I made cookies before Clare woke up. We had one blip in that when Shawn went to get Clare out of her crib, suddenly I heard shouts of, "Tree, come up here!" Running upstairs into her room, there was blood all over Clare's crib. I am sure you can imagine how that makes your heart stop. Clare's hands were covered with dried blood as well. After I washed it off, I saw that she had a little cut on one of her fingers. I don't know how she did it, but a cut plus blood thinners makes a whole lot of blood from one little girl. Since it wasn't a medical emergency (just a laundry emergency), my heart started beating again. We had to throw all of Clare's sheets plus some of her stuffed animals in the washer. After that was accomplished, we played outside on our swingset, then took a walk on our street with Jamie riding his tricycle. Shawn had a business meeting that night, so he cut out of work for the rest of the afternoon.

We have a funny-looking tree in our front yard right next to our driveway. All summer it grew this weird-looking fruit. They looked kind of like peaches, but weren't. My sister's fiance is a.... landscape architect, horticulturist, guy who knows a lot about trees and plants?? (Sorry, Tee, drawing a blank here.) We had previously asked him what the tree was and even he was stumped. Since the tree is now dumping the fruit all over our driveway, we have been running over it with the cars. I noticed that inside the fruit was what looked like a nut. It looked like one of those nuts you get in a bag of mixed nuts still in their shells that you need a nutcracker to open. Not being a big nut expert, I couldn't figure out what it was. After unsuccessfully stomping on the nuts with our feet (even Jamie wanted a try), Shawn had the brilliant idea to take a huge rock and crack it with that. Sure enough, there was an edible nut inside. Well, we hope they were edible because we all tried it. Sweet, with a very familiar taste at the end. After our walk, we ate our cookies and Shawn searched online to see what the nut was. Lo and behold, we have an almond tree growing in our yard! And Shawn's research explained that the almond is in the same category as a peach or plum tree, which explains the appearance. Now I just have to find out if the tree is sweet almond or bitter almond (which is used to make cyanide) before we go trying any more nuts!

All good things come to an end, though. Shawn went off to his meeting, and I made dinner for Jamie and Clare. No dinner for me because the thought of eating was very unappetizing (I will be so happy to move on from this stage of pregnancy!). Clare and Jamie actually were very funny and cute during dinner. They were feeding off each other's crazy antics and laughing so hard, it was making me laugh. After dinner, though, was another story. Jamie is at a challenging age in many ways (I know all ages have their challenges, but parenting an extremely smart 3 1/2-year old has its moments). Now that Clare is getting older, she obviously wants to play with toys, too. Jamie is having a hard time sharing with her, especially sharing HER toys. My mom came to visit yesterday and gave them each some money to buy a treat. We took them to Target, and Jamie picked out a big Spiderman action figure. Clare chose a stacking animal bathtub toy (consisted of Shawn holding up three toys we thought she would like, and bought the one she reached for first). During Clare's bath, she got her first opportunity to play with her new toy. However, it was a big battle with Jamie over it first because he wanted to play with it. Sometimes it just makes me want to scream. I get caught up in the rationalizing with him, then come to my senses that he is 3 and I am the mom, and no means no. This usually leads to some kind of outburst or temper tantrum (from him usually, sometimes from me!), which it did tonight. So I was already a little peeved at him. I quickly finished bathing Clare, then got Jamie's bath ready. Now that Jamie is older, I don't sit with him in the bathroom during his bath. The door is open, and he is a loud bather, so I can always hear him singing and playing in the tub. Since I was solo tonight, I used the time to get Clare ready for bed and down in her crib. I checked on Jamie, and he was playing, but making a huge mess with splashing. Midnight was sitting by the sink watching him. I told him to cut down on the splashing and watch out for Midnight, so she didn't get wet. Then I went in his room to get his pj's and books ready for bed. Next thing I hear is yeowling and a streak of wet, black fur running out of the bathroom. I went in there, and there were three soaking wet washcloths on the bathroom floor. I asked Jamie if he threw them at Midnight, and he admitted that he did. I was so mad. One of those moments when I fought not to lose my temper. I didn't scream at him (but I wanted to), but I did tell him how displeased I was, took him right out of the tub, right into pj's, and right into bed. I told him no books and certainly no cats sleeping in his room tonight (which he loves, and Midnight sleeping with him is a new event). It was one of those moments when Jamie knew that he had crossed the line. I explained that putting water on the cats was not a nice thing to do, especially throwing wet washcloths at them. That his cats loved him and trusted him to always take care of them and treat them right. He cried, was sad about losing the cats for the night, but didn't put up one fuss when I turned off the light and left the room. I did give him a goodnight kiss (I could never be THAT mad at him), and told him that we would talk about this with Daddy in the morning.

So there's my long, venting post. At the end of the day, I have to look back and remember that it really was a good day. Yet one incident can sour my mood on the day. Probably because that taste is left in my mouth at the end of the day. Probably because my little boy went to bed knowing his mommy was upset with him. Probably because my last mental picture of him is him looking up at me with his big, sad, brown eyes and saying, "okay, Mommy, good night" in a little voice. Probably because I wish I could go back up to his room and give him a hug and tell him that I love him even when he does something he shouldn't. I think I'll just go do that.

Sunday, October 08, 2006

A Day of Firsts

We went to a Great Pumpkin Festival in a neighboring town yesterday. I love autumn, Halloween, Thanksgiving, pumpkins, apple picking, all that fun stuff. It's my favorite time of year hands down. Last year, we had all these crazy plans for fall, but they got rained out and then Clare ended up having a cath on Halloween.

The pumpkin fest was awesome. It was a gorgeous, sunny, crisp autumn day. The leaves are starting to change in beautiful northern New England, so the foliage was lovely. There were so many activities for the kids - face painting, pumpkin painting, tours of the fire station, games, pumpkin catapult, yummy food, and a children's singer who got both Jamie and Clare dancing. (And even Shawn, although he won't admit it.) Jamie had a great time doing everything, and even Clare enjoyed herself. It's tough because she is at an age where she is too young to really participate, but she wants to be involved. She had fun just taking it all in. When we went down to the fire station, Jamie got to use a fire extinguisher (with the help of the fireman) to put out a real fire - he thought that was fantastic! He was also eager to try his hand at the pumpkin catapult. He picked out his pumpkin (a perfectly round little pumpkin). When it was his turn, he waited patiently while the man set up his pumpkin in the catapult. The goal is to aim the pumpkin at a floating scarecrow in the river, pull the string to send the catapult flying, then hope the pumpkin hits the target. Jamie pulled that string with all his might. His pumpkin sailed high in the air and hit that scarecrow dead on! Jamie was so excited - he was a winner! He was led into the tent to pick his prize. Jamie carefully perused the table of assorted pumpkin shapes for the perfect prize. He settled on a plastic jack-o-lantern that flashes red and yellow lights. For the rest of the day, Shawn and I answered the questions a zillion times - How did I hit the scarecrow? Did I pick the right pumpkin? Did I pull that string hard enough? Was I winner? He wanted to hear over and over again how he hit the scarecrow and won a prize. With no false pride as the beaming mother, we watched the pumpkin catapult for quite a while later that day and did not see anyone else hit the scarecrow.

Unfortunately, we had our next first right after Jamie became the first contestant of the day to hit the scarecrow. As I carried Clare back to the stroller, she started screaming and flailing her arms. Shawn hurried over, and we examined Clare - could not figure out why she was carrying on until we saw a little well of blood on her left cheek. Shawn took Clare, and I checked myself to see what on me could have cut Clare. As Shawn cleaned off the blood, I could see that it was not a cut, but a puncture - Clare had been stung. By what, I don't know because I did not see any insect near her. Within seconds, Clare's cheek turned red and started to swell. Thankfully, we had already checked out the local ambulance house, so we knew where to go. By this time, Clare's left cheek was bright red and the size of a golfball, but she had stopped crying and was acting fine otherwise. The EMTs listened to Clare's heart and lungs, checked her over for any other rashes or hives (signs of an allergic reaction). Since the only discoloration and swelling was at the site of her sting and her chest sounded good, they gave us an ice pack to reduce swelling and told us what other symptoms to watch for. The EMTs were wonderful and even shared their munchkins with Jamie while we waited. Clare hated the ice pack and screamed every time we put it near her cheek. Within an hour or so, her swelling and redness went down. I was so grateful that it turned out to be relatively nothing.

We enjoyed the rest of the pumpkin fest since Clare was okay and then headed home. That night, Shawn gave Clare her first haircut. Her bangs are ridiculously long, but they were manageable with barrettes and elastics. However, Clare has decided that she does not want to wear anything in her hair. Within minutes (sometimes seconds) of me putting her hair up, she yanks whatever it is right out. And since the baby barrettes and elastics are teensy tiny, I don't want her eating them! So cut her bangs it was. Not the must professional job, but she looks pretty darn cute! And now no more hair in her eyes.

Before bed, once it was dark enough, Jamie and I went in his room and he turned on his prize pumpkin. It flashed its yellow and red lights. Jamie said, "Isn't it beautiful?" And it was.