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.