My Boys

When I was pregnant with Jamie, I wanted a girl (this was before we knew the gender). I grew up with two sisters and had a close relationship with my mother, and I really, really, really wanted a girl. Once Jamie was born, however, I couldn't imagine having a girl. I loved having a boy in a way that I would never have predicted. When I was pregnant with Clare, I wanted another boy (again, before we knew the gender). I wanted Jamie to have a brother. Shawn has always been close to his older brother, Brian, and I wanted to watch that same relationship grow between Jamie and a brother. I would think of all the great stories Shawn would tell about him and Brian playing superheroes, building snow forts, and other fun boy stuff (and I choose to ignore the stories involving fire extinguishers and pots of boiling water). I often tease Shawn about being a "Mama's boy" and cutting the apron strings. Seriously, though, I would be thrilled if Jamie (and Simon for that matter) have half the love, admiration, and respect for me that Shawn has for his mother. The fact that Shawn talks to his mom almost daily, pops in to visit when he is in the area and gets a chance (she lives in another state), and has such a close relationship with her is one of the things I love about Shawn and hope to see that in my own children. Of course, instead of another boy, Clare was born. Again, I didn't care that I had originally wanted a second boy. I couldn't imagine anyone but Clare being our second child. Having a girl is so precious in a way completely different from having a boy. I love the mother-daughter relationship that is evident even though Clare is only two years old.

Now I have my second boy, and we have brothers in our family. Watching Jamie and Simon together is already so cute. Jamie talks to Simon, and Simon seeks him out with his eyes and listens wide-eyed and serious. Jamie is ready with the spit-up cloth when Simon needs it. He is ready with the teddy bear he bought for Simon when he thinks Simon wants to play. He is ready with a pacifier when Simon is fussy. Jamie spent a day with Shawn's mom last week, and when he returned home, he couldn't get enough of Simon - hugs and kisses galore. He helps Shawn bathe Simon and got a thrill a couple nights ago when he fed Simon his first bottle. Since then, he has begged me multiple times over the past two days to give Simon another bottle. (I am nursing, so we're just slowly starting to introduce a bottle of pumped milk to Simon.) Jamie takes his role of the big brother seriously and is already looking out for his little brother. I hope he always does.

Genetics

Genes are a funny thing. It’s amazing to me that out of tens of thousands of genes, Clare is missing a handful and that is why she does not walk, has heart defects, and cries when you sing “Baa Baa Black Sheep” to her, to name a few.

There are days when I totally forget about Williams syndrome and just see Clare as Clare and we do what we do because it’s our life. Without really thinking about it, I catalog her daily medications in my mind and check them off as I dose them out. We go from playgroup to physical therapy without second thoughts, and my only concern is where to wedge a two-hour nap in. But then there are days when it’s not just second nature and everything in me screams against it. The days when Clare is overly frustrated that she cannot get the toy she wants because she cannot get to it. The days when I am bringing three kids to the doctor’s office and trying to keep them all happy while we wait forever for our 10-minute follow-up. The days when we hear that Clare’s heart is working too hard, and the doctors need to relieve some of that pressure or else. Those days have become fewer and farther between as Clare grows older, but they still come. And usually end up smacking me in the face because they are fewer and farther between and I don’t expect them to come creeping up on me (or charging down on me!). But somewhere, deep down inside, I really don’t know if I would change any of it. That is such a tough question. Because if I did, would Clare be who she is? Would she still have her ear-splitting grin? Would she lovingly touch our faces and babble to us, while doling out hugs and kisses? Would she charm the pants off everyone she meets? (In church last week, I was holding Clare, who was remarkably content. When I peeked over my shoulder, I discovered she was holding the hand of the middle-aged man in the pew behind us! Embarrassed, I whispered, “I’m sorry” and tried to disengage her hand. The man smiled and said, “Oh no, she is so sweet. It was a pleasure. She grabbed my hand and was content, so I didn’t let go.”) I don’t want to let all that go either just so Clare can be “normal.” In many ways, I want Clare to be special because she is such a blessing to us and others.

Genes are a funny thing. And we know that Clare is so much more than what Williams syndrome has given her. She has the same strawberry blond hair that her Auntie Chrissy has. She has a mix of Auntie Erin’s dark blue eyes and my and Grand Dad’s green-hazel eyes. She has her daddy’s curls. She has the look of my deceased grandmother. My mom stayed with us for a few days after Simon was born and, one night at dinner, Clare gave my mom such a look that my mom gasped and said, “For a minute, I saw Grandma Ruegg staring right at me.” She has an incredible personality - a sense of humor, goofy, clever, downright adorable. And I know she gets all that from me.

To us, this is the face of Williams syndrome. And we love her so much!




(Warning: the quality of the video is not the greatest since it was on VHS, so I then recorded watching my TV with the digital camera. Backwards way of doing things, but it worked!)

Still A Wonderful World...

even with the news that Clare needs to have another catheterization.

She had her sedated echo this morning. All went well with the actual echo and anesthesia process. Clare came home grumpy and sleepy, which is normal for her after waking up from anesthesia, and is now sleeping it off. Her aorta looks great and her overall blood pressures were good. However, the pressures on the right side of her heart were extremely high, which means that the pulmonary side of her heart is working overtime to get blood flow through. Which means that her pulmonary vessels have become quite narrowed again. So Clare needs to have those distal vessels balloon-dilated open again. Her cardiologist wants her in the cath lab within the next few weeks, so now we're waiting for Children's Hospital to call us to schedule that.

I am bummed for obvious reasons. I had a feeling this was coming and thought I was mentally prepared. But after the doctor went back into the recovery room, I burst into tears. I am still postpartum and hormonal - that must be it! I do feel blessed that it has been 14 months since Clare last had a cath. No one expected her to go this long. Plus she has been doing so well with her development, and I know being cath-free has made that happen faster. (She went on her first bike ride with Shawn and Jamie the other day. Although she was not a fan of her helmet, she loved the ride and was all smiles! You can see her grinning away at me between the spaces in her seat.) No cath is fun, but I think this one will be a whole new ballgame since Clare is older and much more aware of what's going on. Plus I won't be able to stay in the hospital with her this time because I need to be with my nursing baby and he won't be welcome as an overnight guest! So Shawn will be the hospital parent this trip. It's going to be a new experience for us all.

What A Wonderful World

Mother's Day Post Late...Just Like a Guy!

S~ Okay, So had great intentions. I wanted to put together a nice picture show on here to surprise Teresa for Mother's Day. Of course, I could not figure out how to attach music, so I had to ask Teresa, which kind of ruins the surprise. Then I wanted to do a nice post in honor of her, and I am, it's just a little late. But as the saying goes, better late than never! I am so lucky to have Teresa in my life and even more lucky that she is the mother of my children. Everyone says that their wife is the best mom. (I mean we kind of have to say that right?) But, with Teresa, it is so true. I respect her so much for all that she does and all that she sacrifices for these kids. I know I could not do what she does in one day without pulling all my hair out. What I love about Teresa is her complete dedication to us as a family, no matter how hard it gets. I love this picture here because to me it shows Teresa in her true form, a loving mother standing by her children in their darkest hours.During the birth of Simon, I saw the strength that my wife possesses. The way she handled the pain and worked through each contraction was truly amazing. So I thank God for bringing Teresa into my life. I would not trade all the tough times for anything because it has brought me closer to my wonderful wife. Teresa, thank you! Thank you from our kids, and most of all, thank you from me! I thank you for being there with me, and more importantly giving me a home and a family that brings so much joy. Happy Belated Mother's Day post and I love you!

Baby Power

Life with Simon is amazing. I forgot how sweet it is having a newborn. That baby smell, soft skin, downy hair. Simon has his serious, wise-old-man newborn expression as he stares solemnly at us with big dark eyes. We are all in love with him! The power a baby has! (Especially between the hours of 2-4am, which is the time of day when Simon is wide awake and has no interest in sleep.)

Simon's power extends beyond that. He has forced me to slow down. Although the house may be a mess, laundry is spilling out of hampers, and I don't want to even talk about my kitchen floor, Simon requires that I sit down many times during the day and nurse him. I have a book on each floor of the house, so whenever Simon wants to eat, I am ready to take my ten minutes of reading and relaxing and not feel guilty about it. After all, a baby has to eat! Doing a lot of sitting, though, has also forced me to not jump right in and scoop up Clare whenever she wants me to. She is usually content to sit next to me on the couch while I nurse Simon or play at the coffee table, but sometimes she gets restless and wants to be elsewhere. So I have been encouraging her to go where she wants to on her own. Which is something we do frequently, but now I really am not getting up and picking her up. And she knows it. And what do you know, Clare has started cruising! She is slow and tentative, but she will walk along the entire length of the coffee table now. She will turn around and pivot herself from the coffee table to grab onto the couch and take a few steps to the couch (then I do this oh-so-elegant one-armed hauling movement to get her up on the couch with me). She is starting to walk only holding onto one of my hands, since my other one is usually occupied. Her confidence is growing!

Clare was supposed to get her AFO's today, but they were not ready, so she has an appointment next week. Now that she is gaining confidence and realizing the power of walking, I am hoping she will take off with the help of her braces. Clare also has her sedated echocardiogram at the end of this week. I am very nervous about this echo. Her last sedated echo was in November. I have a nagging feeling that this echo may not be good news. It has been 14 months since Clare's last cath, and post-cath, her doctor predicted 6-12 months before she needed another one. Clare has proved that wrong! I am praying she continues to prove them wrong!

Settling In

We are slowly settling in to some sort of routine... okay, not really, but we're working hard on getting there! Simon still does much of this throughout the day which is always a blessing in those first weeks at home.

I am amazed at how well both Jamie and Clare have taken to Simon. Jamie has been a big help - he loves to fetch things (most of the time) like pacifiers and blankets, as well as taking over jobs like putting the soap in the dishwasher and running it. He dusted the living room for me yesterday and rearranged all my picture frames to "make them look better." Jamie wants to be the one to put Simon to bed or carry him upstairs, but we're going to wait just a tad bit longer before we let him take over those duties!

Clare has also reacted better to Simon than we thought she would. Whenever she sees Simon, she says, "Baby" and constantly wants to pat his head and other body parts. At meals, she offers Simon her milk or a piece of food. For the most part, she has been so gentle with her new baby brother. I have only once had to tell her not to pat his head with her hard plastic Elmo figurine and she only honked Simon's nose one time so far. That's pretty good in my book! Clare is even doing better than we hoped with the whole not-hooked-to-Mommy's-hip thing. I am still not supposed to be picking Clare up or carrying her around, but we're breaking the rules a little for both our sakes. (I miss my attachment!)

Today is my first day solo with the kids - Shawn is home, but he is trying to stay out of our way for the most part and get some work done. Thankfully, Simon is my first baby who likes the sling. He is sound asleep in it right now as I catch up on all my e-mails. We took a family walk yesterday with Simon in the sling, Clare in the wagon, and Jamie on his new "big boy" bike. It worked out beautifully! We're going to venture out to the playground later today. I am unsure how it will go, but sometimes you just have to dive in headfirst.

Into the world he comes...

S~So it is 5:00am and I am up, not with Simon, he is sound asleep, but with Clare. Doesn't she know we need our sleep??? So we got home yesterday early afternoon and are now trying to find our routine again. It's funny, but you would think after having two kids already this would be a lot easier, but it is still hard to get everything in order. Oh well, who needs order? So as promised, here are the dirty little details and some pictures as well.

Teresa and I went into the hospital on April 30th about 1:30 pm. Teresa had not been feeling well the last couple of days so we thought it was time. We went in and they checked her and she was in early stages of labor - she had dilated to about 2 cm and was 75% effaced. They started her on Pitocin and then about 6:30pm broke her water. Then things started to really get moving. Teresa and I really wanted a different kind of birth experience this time. For Jamie and Clare's births, it was a real social event with all our family present in the room until the pushing started then it was just the moms. As nice as that was, we were looking for something a little more quiet and relaxed. Teresa really wanted to go without any pain medication so the relaxation was going to be a big factor. So we had the lights down low and a lot of Josh Groban and George Winston coming out of the IPOD. She used the birthing ball at first and then as things started to intensify she did some laboring in the tub (something she wanted to do for both Jamie and Clare's births but never got the chance). About 10:30 she transitioned into hard labor, by 11:30 she really wanted to push but when the doctor checked her she was only about 7cm.


As a side note here I have to tell all of you how Teresa continues to amaze me and how proud I am of what she did. The amount of pain I saw her go through and how she was able to focus herself in between contractions, how she was able to handle the pain. She is a truly an amazing woman and I am so lucky to have her.

This is where things got intense, her need to push was still there however she was not yet fully dilated. For those of you who remember with Clare, she never fully dilated, and Clare was born when she was only about 7cm. She labored for another an hour and a half. Even though she told us after every contraction she didn't think she could do it any more when the next contraction came she was as focused as if it was the first. At about 1:00am she told us she needed to push. We were all getting a little nervous at this point because during every contraction we watched the heart rate drop from 140 (normal child heart rate) to down in the 90's then the 60's. Once we got the go ahead from the doctor to start pushing, Teresa was all business. In three good pushes Simon was out. The problem with his heart rate was caused by the umbilical cord wrapped around his neck.

So Simon Joseph is here and is wreaking havoc on our family but we couldn't be happier. Jamie just loves his little brother and it is so sweet to see him concerned for him when he cries, or go over and give him kisses upon kisses. It will be interesting to see how the two bond as they grow older. They might be spitting images of each other because Simon looks so much like Jamie.

We were really interested to see what Clare thought of the new baby. She is so attached to Teresa. We were really nervous that a jealousy factor would kick in. When she first met him she was more curious than anything else, what is that strange thing all bundled up??? When we brought him home she really warmed up to him. She calls him Baby and likes to pat him on the head. So I think she will be fine.

So we are now a party of five. It is a little strange, but really nice.

Let me introduce...

S~ Simon Joseph! Yes he is finally here! it has been a tiring few days so I will keep this short with the promise to spill all the dirty little details once we are home (and yes pictures as well). Simon came early this morning (1:14am Yikes!) after a long and difficult night of laboring. Boy am I tired (Just kidding!) My beautiful and strong wife was able to go completely natural with no pain medicine at all. I cannot tell you how proud I am of her strength. So our little peanut weighed in at 7 lbs 7 ozs and is 20 inches long. Currently everyone is doing well and looking forward to going home. We will post more soon, as soon as we get some sleep. Zzzzzzzzzzzzzzzz!

Easter Seals Walk With Me

A quick plug for the Easter Seals Walk With Me again this year. We were very successful last year in our pledges and raised a couple thousand dollars for the 2006 walk. We are hoping to beat that amount this year. (And not because we raised the top amount for individual walkers and want all the glory!)

Easter Seals has truly been a blessing in our lives. I read about families who have trouble finding services or do not get along with their therapists. We have never had an issue like that. Easter Seals is our Early Intervention Program where we live. Clare was connected with the organization when she was three months old, a few weeks after her diagnosis. She began her first occupational therapy session at four months old and has been going strong ever since. We all loved her OT from the start. As Clare got older and walking still seemed in the distant future, Easter Seals (without any headaches) added physical therapy to Clare's services. Again, we hit it off with Clare's PT from the first session. In addition, Clare's therapists have aided us in connecting with the swallow specialist, nutritionist, and most recently, the orthopedic surgeon. They are both ready with research and other resources that we may need. All of this is to NO COST TO US. We do not pay a dime for Clare's services through Easter Seals. Medical bills can be very stressful and quite a damper on a family's financial situation. There have already been many, many bills due to Clare's multiple caths and surgery. Not having to worry about how many therapies we can afford or how many our insurance can pay for has been a big load off our mind. We can concentrate instead on making sure Clare gets everything she needs to thrive. Therefore, it is very important to us that Easter Seals continues to be able to offer this same exceptional service to other children (and adults) like Clare.

Please donate to the walk - there is a link to your right that takes you to our personal Walk page. Thank you for your support!

(Nothing to do with the walk, but, yes, we are still waiting for this baby to make his grand appearance!)

Welcome to the AFO Club

Clare is joining the ranks of the AFO Club - not as glamorous as it sounds. In this case, AFO stands for Ankle Foot Orthosis. An AFO is a plastic brace worn on the lower leg and foot to support the ankle and hold the foot and ankle in the correct position.

Clare had her orthopedic consult and x-rays today. We liked the orthopedic surgeon. Although he was brisk and jumped around quite a bit (as Shawn put it, it was as if he was saying what was in his brain as fast as it was going through it), he was thorough and good with both Clare and us. After examining Clare and watching her sit and stand, he thought her standing and sitting were both very good positionally. He confirmed what we already knew that Clare has low tone and very flexible joints. After Clare had her hips and spine x-rayed, we met with the doctor again to go over the films. Her hips and spine looked great, so there is nothing skeletal going on that is preventing Clare from walking. His opinion is that Clare's three big obstacles are her low tone, flexible joints, and confidence in herself. Therefore, he recommended she start wearing AFOs to support her feet and ankles when she is standing and walking. Hopefully with more support, Clare will feel more confident and start cruising at least. Although I am not thrilled that Clare needs "special shoes" to walk, if it gets her to walk, then I will be thrilled.

Clare is getting fitted for her braces next week and, once they come in (probably in a couple weeks), we'll start her in them a couple hours a day. Her PT and OT will continue to work with her in her braces on walking and on developing her arm strength so she can pull herself up into a standing position. Although the doctor warned that Clare may still be a year (or even two) away from walking independently, we are hopeful this is a step in the right direction. Clare is so curious right now that I know she will love being able to walk once she knows she can do it. Then I know I'm the one who's in for it keeping up with her!

My Personal Top Ten

Top Ten Things I Love About Jamie:

1 - He loves any and all superheroes. He will graciously allow me to play Storm, even though she is one of his favorites. But I will be informed that I am Storm #2, as he is Storm #1.

2 - Amazingly, he can be Storm #1 as well as Spiderman, Colossus, Nightcrawler, and all four Ninja turtles at the same time.

3 - He will run and run and run around outside until his cheeks are bright red and he is hot and sweaty. He will come to me and say, "Whew, I'm tired," then take off and run some more.

4 - His new favorite food is peanut butter and jelly sandwiches with Trix inside. And, yes, I do make them for him.

5 - He would entertain us for hours with his shows. He has the best imagination of any kid I know and loves to perform for us.

6 - He refuses to wear the socks with writing on the bottom (as in the Old Navy socks I love for the kids) since he cannot slide on the hardwood floors in them. But he assures me the socks are okay for bedtime, as he does no sliding in bed.

7 - His split personality - he likes to wear Batman underwear, but a Superman t-shirt so I am kept guessing all day long who he really is. And watch out if he has Fantastic Four band-aids on as well.

8 - He has become Daddy's grill buddy. I love seeing the two of them out there in their lawnchairs, with their beverages (beer for Shawn, juicebox for Jamie), grilling us dinner.

9 - He is the greatest big brother. He is Clare's protector. He loves to sing to her, comfort her, hold her, and loves to help her walk by holding her hands. He is constantly kissing my stomach and telling me he misses Simon and when is he going to come.

10 - Even though he is growing so fast, there are still moments when he is my baby. He still likes me to sing him a song before bed and tuck him in. He lets me give him hugs and kisses whenever I want to. He allows me to be his personal slave a good majority of the day.


As I lounge around the house in my last days of pregnancy, I know it is hard on my family. I can't bend over to pick anything up so Jamie has become my fetching boy. If Jamie needs help and he is upstairs, it takes me about an hour to get up there. But rarely do they complain, and I love you all for that! I am so blessed by my family.

Beach Bums

Jamie, Clare, and I went to the beach today. I cannot believe I am actually saying this since last weekend, we were still shoveling snow off our deck. It reached 90 degrees today! A brief taste of summer for us since I think winter is over. (I say that hesitantly because you never know.)

If you had asked me last week, lugging two kids plus all our gear plus my hugely pregnant self to the beach on a Monday morning would totally not be in my plans. I was in the habit of keeping my Mondays clear of appointments so I could take the girls (K - it was so weird not to have them today! I almost called you to ask if I could take them, then I saw that YOU didn't even have them today). However, I no longer babysit on Mondays, so we had the whole day looming before us with absolutely nothing written on the calendar. Which can be daunting sometimes. What are we going to do all day? No doctor's appointment, no therapy session, no scheduled playdate, no swim class? We are usually so busy running around that a day of nothing planned can be wonderful. But lately, I need activities to fill our day or else we all go insane. I just don't have the physical and mental energy to entertain Jamie and Clare all day long. So when my friend Jamie said last night that she was bringing her girls to the beach today, I thought it sounded like a great idea. Who knows when we're going to get another perfect beach day, plus I am even more wary of lugging THREE kids to the beach by myself this summer!

And it was a perfect beach day. Jamie was happy as a clam (pun intended!). He and his friend Elyza played in the sand and in the water (the water was icy cold, but that didn't stop Jamie). Jamie would have stayed all day except Clare was not as happy at the beach. She enjoyed herself for the first hour or so - under the umbrella eating Pirate Booty and Trix. I tried to get her to play in the sand, but she wanted nothing to do with it. That surprised me because she loves the sandbox at home, but I think she didn't like the wet sand. I tried taking her down to the water, but when I discovered the water was too cold for even me, I knew there was no way Clare would like it (unless it's bath water temperature, she won't go in a pool). So it was back on the beach blanket for us. Even though Clare was in the shade for the majority of the time, her little cheeks were so flushed. The heat affects her so quickly and drastically. Eventually, I had to force Jamie to leave or I thought Clare would pass out. Maybe it was too much on her after a week of being sick, but she was finally acting like herself yesterday, so I took a chance. Even though Clare was miserable for the last half-hour or so, our first trip to the beach this year on a whole was great. And it wasn't as hard as I expected although I think everyone will sleep well tonight! Now if I can only make it through the rest of the week! Clare has her orthopedic consult in Boston on Wednesday, so the baby is under strict instructions to stay put until we get back home. I don't think it's going to be a problem because I am not due until next Friday, Jamie was six days late, and Clare was nine days late, so we still have some time before I expect the baby to come.

Busy Doing Nothing

It was a long, busy week, yet I spent most of it sitting down doing nothing. Clare came home on Wednesday afternoon, yet she still had some recovering to do. She spent the rest of the week and this weekend very tired and crampy. She is on the mend, but was only content when sitting with me - on the couch, on a lawnchair, in the rocking chair. It didn't matter as long as she was in my arms. I feel so helpless when my children are sick and in pain and there is little I can do to make them feel better. The only thing Clare wanted was Mommy, so that's what she got. I am so proud of Jamie in times like these because he entertained us with numerous shows - superhero shows, dinosaur shows, pirate shows. Thankfully the weather is finally spring-like, so he was able to expend lots of energy running around outside. It's not easy for a rambunctious four-year old to be cooped up and watch his mom and sister just sit there all day.

It was hard on me, too, because as much as I enjoy sitting down, sitting with almost-20 pounds resting on top of your huge stomach gets pretty uncomfortable after 10 minutes. Plus with less than two weeks before my due date, I am totally in nesting mode. My to-do list is miles long. However, very little of it was accomplished this week. It may have felt like I did nothing all week, but I have to remind myself in these moments that I am really doing my primary job - being the mother of these precious children, whatever that entails.

Just A Quick Visit

Clare is home from the hospital. Just a quick 30-hour visit to get some fluids in her. She is still very tired, but is definitely feeling more like her old self. She was able to keep down some yogurt and milk this morning, so she's making steps in the right direction.

Now we're going to keep praying that no one else, especially pregnant me, gets sick!

Getting Through Today

First of all, thank you to all my wonderful friends and family who participated in a Mother's Blessing last night for me. As I get closer and closer to the birth of our baby, I am reminded again and again how I need the love and support of those closest to me. The showering of love, prayers, kindness (and pampering products and frozen post-baby meals!) was incredible. I couldn't do this without you!

Clare is in the hospital today. She fell victim to a stomach bug that has been going around. She showed minor symptoms Sunday night and it became progressively worse. She woke up this morning at 4:30am, but could do nothing but lay in her crib and moan and whimper. She did not want to be touched, so I brought her into our bed, where she continued to do the same. After two hours of this (and upon realizing that her diaper was completely dry after 12 hours of sleep), I called the doctor who told us to bring her right to the ER. Given her medical history and the condition of her blood vessels, dehydration is not something we can mess around with with Clare. She was admitted to the pediatric ward and is currently being treated with IV fluids. Her electrolytes are expectedly low from not being able to keep anything in, yet having more and more come out. Right now, we are waiting to hear if she is to stay overnight or not. I am staying home with Jamie today, so if she does need to stay overnight, I will be the one to stay in the hospital with her. In my last update from Shawn, he said that Clare seemed to be perking up a bit after multiple bags of fluid, but there was still no decision whether she was going to be released or not. Hopefully the fluids will do their trick and Clare will be home again soon.

Bubbles

I love watching Jamie and Clare have fun together!

Animal Checkout

Jamie had his annual checkup a couple weeks ago, and Clare had hers last week. So we’ve been reading our Winnie-the-Pooh story about when Pooh gets his “animal checkout” (Pooh’s term) to prepare for the upcoming visits.

Jamie was counting down the days to his doctor’s visit. We even drew a band-aid on the date on the calendar in his bedroom so he knew exactly when it was coming. I think someone has definitely had to sit through more than his share of doctor’s appointments that were not his. Now it was his turn, and he couldn’t have been happier – three shots and all! Jamie has never had a problem growing and is the picture of health! We were relieved to learn that many of our parenting challenges with our four-year old are normal and all about power. He knows we have it, and he wants some. (Don’t we all!) Clare was not feeling the greatest the day of Jamie’s appointment (more teeth coming through), so Shawn took Jamie alone. The report was that the patient did great. Healthy as a horse!

Clare’s appointment, of course, took much longer. We had a list of about twenty topics we wanted to discuss with the pediatrician. Number one was the GI issue. Clare’s weight was 19 lbs, 4 oz, which we were very happy about (a gain of 5 ounces in two weeks, which is good for Miss Clare). Hopefully the days of gaining only an ounce every 3-4 months are over. The pediatrician agreed that we should not tinker with her Prevacid dose at all since it is working. We went over the studies regarding Prevacid and calcium absorption with him, and he agreed that this was not an issue to worry about right now. He also agreed that Clare does not need a GI doctor at this time. Yea! Our pedi handles the medical issues all the time that the GI is supposedly handling in Clare’s case. Other than Clare’s heart and thyroid medications (which we obviously do need an endo and cardio involved with), our pedi regularly prescribes the other medications Clare is on and is the sole doctor of many children on these prescriptions and with these medical issues. So we are done with the GI (and I happily cancelled our follow-up GI appointment). Of course, this is with the understanding that if Clare does develop more serious GI issues, we start seeing the GI again. We readily agreed on the condition that we get a referral for a new GI. All parties were satisfied!

We had some other concerns regarding Clare, but nothing too major. Her pedi is interested in hearing the results of the orthopedic consult which is in a couple weeks down in Boston. Plus we are going to consult with Clare's cardio about possibily taking her off her blood thinner or switching to aspirin, now that Clare is two (she was originally supposed to be on her blood thinner for only three months or so - it's been 19 months now and counting). Shawn is allergic to aspirin, which is why Clare was put on a different medication. But our pedi feels that the age of two is a good time to test out the aspirin, if the cardio agrees. We also want to move forward with getting Clare's tongue released, so it does not inhibit any speech or feeding skills. Again, the cardiologist has to approve the procedure, but we're hoping our pedi can convince her. Since Clare is now two, it should be a fairly simple office procedure (okay, maybe not to Clare, but compared to other things she has been through!).

Other than that, Clare is doing great. She finally received her MMR vaccination (we had delayed until she was 2 because of the possible link between the vaccine and autism - no sense taking a chance with something she may be at a higher risk for). We were surprised to hear that her speech is almost right on target for a typical two-year old. The pedi looks for about 30 words at the age of 2, and Clare has around 20. She is not putting words together much yet, but we were pleased to hear she wasn't that far behind. Normally, Clare would not need to go back to the pediatrician until she is 3, but we are doing a 6-month in-between visit. Clare likes to keep us on our toes!

The photo has nothing to do with Jamie and Clare's doctors appointments, but we finally got this photo back from the photographer, and I just had to share my beautiful children with everyone!

Hop Hop Hop

Snow for Easter. But not at Christmas. Isn't that the way of the world? We still had a fabulous Easter (hosting at our house for both families as we usually do) and did our annual Easter Egg Hunt inside for Jamie, Clare, and our two nieces, Jasmine and Alex. Jamie was the master hunter of the day, finding over 20 eggs (we colored and hid five dozen). Clare, with help, enjoyed finding eggs as well. And throwing them in her bucket. And banging them together until they cracked. I predict lots of egg salad in our future.

Even though it can be a lot of work, Shawn and I always enjoy entertaining. It was a nice day with our families. (We missed you, Christina and Tee Jay! I think the egg biscuits turned out okay!) Easter baskets were passed around, Shawn grilled an awesome lamb, and the rest of dinner was delicious. My dad also brought up two dozen Krispy Kreme donuts for Clare (I admit I ate one or two) but, really, what's better than eating Easter candy for breakfast, lunch, and dinner? Jamie has decided that sitting for posed photos is not really worth his time, so this is truly the best photo we got of both kids together. But they did look cute in their Easter outfits. As Clare gets older, I love watching her interact with the family more and more. She is such a ham, just like her brother. At one point, Jamie was off running around with his cousins, and Clare held court in the living room, surrounded by seven adoring adults. She grinned and babbled and just charmed everyone. When she starts walking, watch out!

Not that I am counting down the days or anything, but Easter marks four weeks to go! I have to say, though, that I am feeling great. Other than the usual pregnancy woes, it has been a fairly easy almost nine months. Of course, I am looking forward to the arrival of our baby boy, but I am also trying to enjoy these last few weeks of pregnancy. Although Shawn and I want more children, you never know if this is the last one, so I don't want to rush it too much. Plus I know that a new baby is an adjustment for all, so I want to enjoy these last days as a family of four.

Wishes Do Come True

We gave Clare a sand and water table for her birthday. There is a rice table at the local children's museum which Clare recently discovered was great fun. She loves to play with the rice and drive the trucks around in it. And the table is the perfect height for her to stand at it while holding on. Plus she always enjoys playing in the popcorn kernel bucket in the sensory room, so I thought a similar type table would be a terrific idea for a birthday present that doubles as a therapy toy. Jamie helped me pick it out (thus the castle and dragon theme) and couldn't wait to give it to Clare (and perhaps play with it himself?).

We set the table up the day after Clare's birthday and filled it with just water. (There is a space for sand as well, but we're debating sand versus rice versus beans... we'll see who wins!) Clare had a blast (and Jamie, too). She was laughing and grinning and making a grand splashing mess. I dressed her in her raincoat to avoid a soaking, but by the time dinner was ready, Clare was drenched from head to toe. At least the table was a huge hit!

And wishes come true for all. As I mentioned in an earlier post, it was a disappointing winter for Jamie. He longed for snow and desperately wanted to build a snowman. Which is all fine and good in January or February, but it is downright cruel in April. Nonetheless, here we are today. Shoveling out under inches upon inches of snow (because, of course, the snowblower had to break), sweeping snow off our patio furniture and outdoor toys that we pulled out last weekend to enjoy the gorgeous spring weather, burying the six dozen eggs and other groceries I just purchased under the snow on our deck to keep cold since we lost power (indefinitely it seemed, but thankfully we are back on now). Yet it was stunningly beautiful this morning to wake up blanketed in snow - wet, heavy snow that draped on all the branches and bushes. The perfect kind of snow for building a snowman. Unfortunately, not the perfect kind for Easter egg hunting.

Birthday Bash

We had a small birthday party for Clare today - just our family and the children's godparents. Clare is easily overwhelmed by a lot of noise and people, so we wanted to keep it low-key. On Friday, our playgroup got together and they had a present and cupcakes for Clare. All the kids wanted to sing "Happy Birthday" to Clare, but I explained that it scared her (Clare hates "Happy Birthday" and "Rock-A-Bye Baby"), so they whispered it instead. Very cute!

So I knew today that singing would be off-limits. This morning, I came into the living room with the video camera to capture our newly-turned-two-year-old on film. As I came in, I said, "Happy Birthday, Clare!" in a nice, bright, chipper voice. Apparently it was too much like singing for her because Clare burst into tears. It took a little while to calm her down after that! Poor kiddo! I am glad we made the decision to keep Clare's party small because she enjoyed every minute of it, but was getting overstimulated by the end. (As was I, but at least I can handle it better!) I wanted Clare to have fun at her party, not be scared. There was nothing fancy - just pizza, cupcakes, and our closest loved ones. That's all that really matters anyway. And tons and tons of presents! Clare loves to unwrap presents and was eyeing the big pile of gifts throughout the party. She was ecstatic when it came time for her to open them and look at all her new goodies. She had a little competition from the other children at the party, but her newest word is "mine," so she used it often! It's nice to see your child being feisty and sticking up for herself, especially since it's easy for Clare to get walked over (both literally and figuratively) because she cannot crawl or walk.

It was a gorgeous day, and we provided bubbles for all the kids (one of Clare's favorite activities), so it was heavenly to spend time outside enjoying the spring sunshine, the swingset, and the bubbles. I love having parties at our house. It is so comfy to have your home filled with laughter and love. We are very blessed to be surrounded by both in abundance. Clare had a wonderful birthday.

I have a little mental list that I am checking off as events happen (Clare's birthday, Easter, that kind of stuff). I am due in five weeks and that seems like an eternity away sometimes. But as we reach events on my checklist, I cannot believe I am ONLY five weeks away! My baby is now two years old, so we are getting closer and closer to welcoming our new baby.

Happy Birthday, Clare!

Dear Clare,

It is hard to believe you are two years old already. I still think of you as my baby in so many ways. But then I look back at the photos of you as a baby and I realize what a big girl you have become. We are so blessed to have you in our lives. This blog has detailed (sometimes minutely) what a rough road some days have been, but I hope we have also shared with you the wonderful times, the sweet times, the silly times, and the lovely times we’ve had. Without you, we wouldn’t be on this journey, and I am grateful for every day we get to spend together. You bring so much joy to our entire family. We love you so much, Clare Bear! Happy Birthday!

Love,
Mommy & Daddy



You Are Loved (Don't Give Up)
By Josh Groban

Don't give up
It's just the weight of the world
When your heart's heavy
I will lift it for you
Don't give up
Because you want to be heard
If silence keeps you
I will break it for you
Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved
Don't give up
It's just the hurt that you hide
When you're lost inside
I'll be there to find you
Don't give up
Because you want to burn bright
If darkness blinds you
I will shine to guide you
Everybody wants to be understood
Well I can hear you
Everybody needs to be loved
Don't give up
Because...you are loved
Don't give up
It's just the weight of the world
Don't give up
Everyone needs to be loved
You are loved

You're Fired

Clare had her GI follow-up last week. This was the first time she had seen the GI since before her eating strike almost four months earlier. After the appointment, Shawn and I were in agreement that it was time to either stop seeing a GI all together or find a new one.

On a personal level, Clare's GI is a super nice guy. Very friendly, warm, and great with the kids. I am not saying he is incompetent medically, but we have not been happy with Clare's care lately. We are very unhappy with how the GI office as a whole handled Clare's eating strike. No one ever suggested we bring her in for an actual appointment - in fact, they told us it was a pediatric issue and we needed to be seen by her pediatrician. (Which we did and even after pediatrics could find no sign of what was causing the strike, the GI office STILL did not recommend a visit to them.) Clare was initially referred for a GI consult about 18 months ago due to poor weight gain, failure to thrive, and feeding issues - so how is a prolonged eating strike not their problem? Sounds like it falls perfectly in the GI category to me. We never once spoke to the GI during the six-week eating strike (not for lack of trying on our end). We were treated callously by the nursing staff and had to fight tooth and nail to have blood work done that the GI had ordered in the first place (we just wanted it done earlier than he had intended). I was ready to consider that water under the bridge, though, since Clare's pediatrician had diagnosed reflux and Clare's eating improved dramatically.

At her follow-up, the GI glossed over the eating strike. Didn't even really seem concerned about it. We informed him Clare was now on an appetite stimulant and Prevacid. Then he tells us he doesn't think Clare even has reflux. What??!!?? He had absolutely no evidence to back this up, just something he thought. And he kept saying that reflux was just heartburn. Maybe it is, I don't know. But I have had wicked pregnancy heartburn these last few months and it is killer. If Clare does have "just heartburn," the poor thing! No wonder she was done with eating. So he instructed us to cut her Prevacid dose in half with the goal of weaning her completely off it. His reasoning was that Prevacid interferes with calcium absorption and could cause bone necrosis, so she shouldn't be on it. Now this really irked me because he obviously has no idea about the calcium issues children with WS can have. I would venture a guess that at least half of all children with WS suffer from hypercalcemia (too much calcium in their system) and are on low- or no-calcium diets. Clare has always been on the borderline of hypercalcemia, so we have never had to watch her calcium intake. I sincerely doubt that her antacid interfering with some of her calcium absorption is going to be a problem, since individuals with WS (for some reason) absorb calcium too well. Then when I got home and asked around on my WS e-mail list about Prevacid, I was pointed in the direction of articles describing a small study done in England on patients over 50 who were on Prevacid who suffered hip fractures. Clare totally fits right into that category! Furthermore, doctors disagree whether Prevacid was even the cause of increasing the risk of hip fractures in older individuals. And, if it is the cause, the solution may simply be to consume more calcium. (Thanks a million, Amy, for all your help! I am now armed and ready!)

Shawn and I were very displeased that the one treatment plan the GI wants to institute is to take Clare off her Prevacid. The one change in Clare's environment that ended her six-week eating strike. We had seen her pediatrician the week before, and he had said don't touch a thing since Clare's eating had improved. (And she weighed 18 lbs, 15 oz at the GI's office, so her weight gain is chugging along!) Shawn and I hashed it out over and over, and we both feel it is time to move on. The only medication the GI has prescribed for Clare is her Miralax for her bowel movements. And I had to ask for that medication! After watching Clare scream in pain one too many times to pass a bowel movement, I called the GI and demanded a prescription. I even knew the name of the drug because my friend Michelle's son has similar issues. We also just found out that Miralax is now sold over-the-counter, so we don't even need the prescription anymore. I know Clare has GI issues - her severe constipation and reflux are the two big medical issues we are dealing with right now, since her heart is currently stable. However, we have a handle on the constipation, can purchase the medication ourselves, and our pediatrician has been handling the reflux stuff. So why do we need a GI involved anymore? The only thing he has ever done is give us samples of Pediasure to try and recipes to fortify Clare's food. And that has been helpful, but our pediatrician (or pretty much anyone) can do the same thing. I don't mean to knock the GI over and over, but Shawn and I refuse to mess around with the one thing we feel is helping Clare eat (her Prevacid). And if we don't value the doctor's advice, why are we wasting time and money bringing Clare to see him? She has her two-year visit with the pediatrician next week, so we're going to run everything by him. If the pediatrician feels Clare does need a GI involved in her care, then we're going shopping. (Ironically, the other GI in our clinic is the wife of our current GI, so that wouldn't work too well!) We'll head down to Boston, if we have to.

As Promised

Here are our most recent professional photographs. We had a series taken of both Jamie and Clare that shows their many expressions, but these two were our absolute favorites. They capture both their personalities perfectly. I had originally wanted to do some pregnancy photos with the kids, but this was the only one I halfway liked. Unfortunately, I just look chunky in it, not pregnant (since you cannot see the big belly)! But Jamie and Clare look beautiful, and Clare hugging Jamie was completely spontaneous and not posed.

Just Hanging Around

Really not much new going on here. Shawn is way up north in Maine tonight, so I am parenting solo. I told him no more overnights once April hits since it is getting harder and harder to keep up with Jamie and Clare all day, evening, and bedtime, then do it all over again the next day. Thankfully, I am blessed with a terrific husband, and he tries to keep the overnights few and far between. However, he has recently taken on some additional responsibilities with his job (after surviving lay-offs at his company - the call deciding his fate came in while we were in Disney. Thank goodness he was a survivor or that would have been a real bummer in the middle of Animal Kingdom!), so overnights are inevitable. I try to just keep on smiling!

Clare's OT and I have begun discussing the transition process of her end with Early Intervention and beginning with developmental preschool. (That's Clare and her OT, Jess, in the photo.) I still cannot believe Clare is going to be two years old in less than two weeks. There are many things that need to be done over the next year so the transition goes smoothly once Clare turns three. Many meetings, evaluations, that kind of thing. Figuring out the right setting for Clare in preschool, determining what types of services she will need to receive (such as OT, PT, speech), and how she will get to school. Right now, we are facing the decision that we may have to put Clare on the school bus. When I first signed on to the WS e-mail list, I remember reading posts from parents whose 3-year olds rode the bus to preschool. I was shocked and said to Shawn, "How can they even think of sending their 3-year old on the bus? I would never send my typical 3-year old, never mind my 3-year with developmental delays." Aahhhh... I may be eating my words. It's a logistical dilemma depending on what time school starts for Clare and how much Shawn can help out with transportation, since Jamie is going to a private preschool and I will have to drop him off. There is no bus option with Jamie. But I have since learned that riding a school bus to developmental preschool is vastly different from riding the big old yellow bus to school (something which I never had to do growing up since we always lived in walking distance of school). There are aides and helpers and all kinds of people to watch out for my Clare on the bus. It still is daunting to me, though.

Clare continues to expand her vocabulary. Her new favorite word is "money" and she knows exactly what it means (at least she knows what dollars and coins look like) and where it is. Like in my wallet, the piggy bank, Jamie's metal Batman container, and our Lenten rice bowl that sits on the kitchen table. Whenever she sees a receptacle that she knows contains money, all I hear is, "Money? Money? Money?" until she is allowed to open and play with the money. She is very good about not putting the money in her mouth, so I let her indulge. Developing her fine motor skills, after all! As for her gross motor skills, we're still working on those. Yesterday, she wanted something across the room and was trying desperately to get up on all fours. She couldn't manage supporting her weight on her arms by herself, though, so I held her by the waist and she crawled across the room. When I let go of her waist, she plopped belly down on the floor as if her arms could not hold her up. (Something to ask her OT and PT about this week, as well as the orthopedic surgeon next month.) But she definitely knew how to crawl with a little support. When I attended the WSA luncheon last weekend, I met another mother whose four year was walking at 14 months old, but he still did not say any words. It continues to amaze me how WS can manifest itself differently in each child. There is absolutely no predicting what challenges Clare may be faced with.

Jumping from subject to subject here, but I am definitely ready for winter to be over. Even though it was a pathetic winter snow-wise, it was still super cold at times. And very, very dry. We lost Clare's curls this winter due to the dry air and my pregnant skin feels it, too. (It was cute when we were in Disney because Clare's hair instantly became ringlets of curls again!) We've been dealing with cracked lips, sore noses, chapped cheeks, you name it. Last week, we had a brief, lovely taste of spring. It was warm enough that we could shed our heavy coats, gloves, and hats. All the snow melted. We took Jamie and Clare on puddle walks along our street. (Clare testing out the new wagon and loving it!) I even was able to bring them to the playground one afternoon. It was a little soggy from all the melting snow, but Jamie was in his glory for over an hour and even Clare enjoyed the fresh air. Sadly, over the weekend, we got buried under more snow and ice (and, even sadder, Shawn's snowblower broke before the big storm and he could not get it fixed in time), so we're back in winter again. Only three weeks until Easter, so we are hoping the snow melts again and our yard dries up in time for our annual Easter egg hunt. Otherwise, I feel bad for that poor Easter Bunny hiding all those eggs in our snow drifts.

A Day in the Life

Celebrating Another Anniversary

We are celebrating another anniversary over here. It has been more than a year since Clare has had a heart procedure. After Clare's last cath in March 2006, her cardiologist said we were most likely good to go for 6-12 months. This is the first time Clare has gone longer than expected. Usually she's back in the cath lab much sooner than the doctors predict.

I have a good friend whose four-month old daughter underwent her first cath today (with flying colors, I just heard!). We have been sending prayers and good vibes down to Boston all day. As I talked over stuff with my friend prior to the cath, it brought back the slew of memories and emotions of when Clare had her first cath when she was around the same age. I still have a hard time believing Clare was that small when she underwent her first cath - she still seems so small and fragile now, I can't even remember how tiny she must have been over a year and a half ago. Although I would never wish this on any parent, it has been nice to have someone close who understands what we've been going through with Clare. When Clare was first diagnosed, we were put in touch with a woman who had three sons with Clare's type of heart defect (we met this woman through a friend and then discovered coincidentally that the children also shared the same cardiologist). It was a great help to have someone to ask questions of prior to Clare's cath, but at the same time, I barely knew this other mother, so it was also awkward. I am so glad to be able to share my experience and knowledge with another mother and maybe make someone else's experience a tad bit easier. I know nothing can completely take away the stress, fear, and worry, but it can be a comfort to know there's a friend you can talk to who has been there. And somehow survived!

Clare's next sedated echo is scheduled for May 18, so we know she won't be having a cath before then. I have a sneaking suspicion that our time is up, however, so we'll see what happens in May. Of course, I am due on May 4, have a history of being post-due in my pregnancies, and this is the only date our cardiology office can do echos under general anesthesia in the surgical center, which is what Clare needs. It will be very interesting to see what happens come May.

Fetal Echo #2

I had my second fetal echo today at 32 weeks. The absolutely incredible awesome news is that there is NOTHING WRONG with the baby's heart. Everything looked perfectly normal - structure, function, output, thickening, etc. - it all looked great. The cardiologist wants me to bring Simon in the first month after he is born just so she can take a peek at him in person, but she says his heart looks great right now and she would expect to see something by now if there was going to be a problem.

The bad news is.... I think he's going to be a whopper of a baby. I asked the echo tech if she could estimate the size at all. She couldn't do an actual weight, but she did measure his head and he is measuring at 34 weeks. And I am only 32 weeks along! The average baby-in-utero gains about 1/2-1 pound per week, so if he's already 1-2 pounds ahead of the game.... Eeek......

WSA Mother's Luncheon

I went to a mother's luncheon today hosted by the New England chair of the Williams Syndrome Association. There have been other events in New England, but most have been too far away for us to trek out with two little ones for a day trip. This event was only about 15 minutes away, so it was something I definitely wanted to attend. Plus, like I said, I finally got to meet Kerry! It's so great to actually meet in person someone you have chatted with for months over e-mail.

The luncheon was fabulous. I was a little nervous going because it can be awkward getting together with other ladies that you do not know and the only thing you know you have in common is that you all have a child with a rare syndrome. What are you going to talk about? Duh.... Williams syndrome obviously. But it was more than that. We got to share stories, ideas, tips, but it wasn't a whine session or anything negative. Some parts felt like an episode of "Medical Mysteries" hearing all the different challenges our kids are faced with. You get so wrapped up in your own little world that it was nice to break free of that and see that you are not alone and there are many others walking down the same road. Since everyone was somewhat local, I also got some good advice on area resources and things to research - such as music therapy and hippotherapy (working with horses). There is a music camp in Massachusetts just for children with WS, so I am excited to attend an open house there in the near future.

And Kerry was awesome! (You were, you were!) Her son Brady is 17 months old, so he's not too much younger than Clare. We discovered she only lives about an hour away, so now we have no excuse not to get Brady and Clare together at some point. And, because I am pregnant, I have to comment that the food was delicious, and I ate three servings of lunch and two of dessert. Totally taking advantage of the pregnancy status! We'll see what the scale says when I go in for my OB appointment this week!

News Report

We're settling back in after our vacation (which means doing load upon load of laundry and putting away the thousand new toys we came home with). Jamie is spending the weekend with my family in RI, so Shawn is taking this opportunity to finish painting the living room (yea!) and I am going to seriously go through the toys and throw, throw, throw away. (Or at least put away, put some in our yard sale pile, that kind of thing.) Clare is going to enjoy being the center of attention for the weekend!

To update on our lives, Clare had her last RSV-antibody shots this week. Hip hip hooray! She is done with them forever. After receiving two shots a month for the past five months and doing this last winter as well, both Clare and I are glad to have that over and done with. I must say, I don't know if it's the shots, but she has been remarkably healthy these past two winters. For such a peanut, she has only ever had one real bad cold last winter which turned into croup. And Jamie can get cold after cold, but it does not pass on to Clare. That's one strong immune system! Clare also had her follow-up with the pediatrician for reflux. The medication is working beautifully, so we are not going to change anything. Her weight was actually down a couple ounces (after all those Krispy Kremes, I was shocked she wasn't tipping the scales), so I don't think she's going to hit 20 pounds by her second birthday (or even 19 pounds for that matter), which was my personal goal for her. Her pediatrician printed out her weight history for me. All in all, she is still gaining, which is the important thing. I was looking over this record and I couldn't believe how many doctor's appointments she has had since she was born. 59 appointments. And this is just to the clinic where five of her doctors are - that does not even count her ear doctor, eye doctor, audiologist, therapy sessions (let's not even go there!), blood work, x-rays, echos, or our trips to Children's Hospital in Boston. Going to the doctor's is such a part of our lives now that it is routine. I never really think twice about it anymore. Now that I personally am going every two weeks (and soon every week), it doesn't even phase me. Which I guess all things considered is a good thing. Going to the doctor's used to be a huge deal and take up a good portion of the day. Now we just go with the flow, get in and out as fast as we can, and leave it at that. So we are learning some stuff!

We went to our fabulous photographer to have the kids' pictures done this morning. It has been a year since we updated our professional portraits, so I was praying all would go well. Jeff, the photographer, is an amazing artist, but he has had one goal since Clare was born - to get her to really smile for a photo. It has not happened yet. Well, he achieved his goal! We did some photos of Jamie and Clare individually and then together. Jamie was a total camera ham. He would ask Jeff how he should be posed and even posed himself and Clare for their first photo together. Too funny! Clare took a little more coaxing, but we let her sit on a trunk (which was the prop for her picture) and eat her snack first. When she was done, she was all smiles for the camera. The photos are beautiful, as always, and I cannot wait to share them when we get our prints back.

This weekend I am attending a mother's luncheon for the New England Region of the Williams Syndrome Association. I am looking forward to having this time with other moms of children with WS. Plus I get to finally meet one of my other WS blogging mommies, Kerry. She only lives an hour and a half away, but that can be so far when you're busy busy with your family!

P.S. Thank you to all who have contributed to the WSA Valentine Fund in Clare's honor. We are so blessed with the continued generosity of family and friends (and strangers!) to aid in the research being done into Williams syndrome and providing a better future for children such as Clare. If you are interested in donating on Clare's behalf, you can visit this link: http://www.williams-syndrome.org/valentines/ClareRouillard.html

Where All Your Dreams Come True

That's right, folks, we're talking about Disney World!

We just got back from our spur-of-the-moment vacation to Orlando. It's been planned for a few weeks on a whim Shawn and I had. Winters in NH can drag and drag, even when there's no snow. After a long winter and lots of stress over Clare eating/not eating and Shawn's job, it was time for a break!

Without boring everyone to death over every last detail of our trip, I can sum it up in two words - incredible and exhausting. We stayed right at the Animal Kingdom Lodge in the Walt Disney World Resort. It's an amazing place. Our balcony overlooked the savannah and we saw giraffes, zebras, ostriches (to name a few) every day right outside our window. And not behind a fence or glass - they were right there. Jamie loved looking for the animals with his "noculars." The Lodge is African motif and was stunning with amazing African restaurants. The one downside - apparently Jamie is allergic to guava! He loved the jungle juice they served at the Lodge, but had a nasty case of hives from it. Luckily the Benadryl has finally kicked in!

We spent our time between Magic Kingdom and Animal Kingdom (and the hotel, where Jamie discovered the thrill of water slides). It was truly a magical vacation. Shawn had never been to Disney, and I went once as a child to Epcot, so we loved it. The weather was perfect (so wonderful to be in 80 degrees, but quite a shock to come home to 3 degree weather.) It was tiring, though, because both Jamie and Clare preferred to be carried a good majority of the time. But it was worth it to see the expressions on Jamie and Clare's faces (not to mention Shawn's!). We weren't sure how Clare would do on the rides at Magic Kingdom, but she loved them (that great vestibular stimulation!) as long as they weren't too dark or noisy. She liked the flying rides best - like Dumbo and Aladdin's Flying Carpet. Jamie's favorite was the race cars. Shawn and I loved the shows at Animal Kingdom - the Lion King and new Nemo show.

We had reservations for character dining. You never know how that's going to go over. The first day, neither Jamie nor Clare got too close to any of the characters, but by the time we had dinner with Tigger and Pooh, they both loved it. We bought Jamie an autograph book (after he saw the other kids with them) and he was diligent about having every character he met sign his book. He also needed to receive and give a hug and kiss to everyone. After she warmed up to them, Clare, too, wanted to hug and touch all the characters. She was fascinated by them! We also had dinner with Goofy and Minnie (among others) and breakfast with Donald. The only people we really didn't see were all the princesses, but that's okay because we're not a princess family (yet!).

I can't describe adequately what an amazing trip this was. Although it was physically hard on us (especially me at 32 weeks pregnant), I am glad we have the memories. Clare discovered Krispy Kreme donuts (she ate at least two every morning for breakfast - not the healthiest diet, but good for fat!). She would start hollering if the second Krispy Kreme wasn't put in front of her fast enough and ate it in fistfuls of donut. Jamie couldn't wait to see what was around every corner. He was always on the lookout for a character or another ride. It was incredible to be able to experience the magic of Disney with our children. We hope to be able to do it again in the future.

Nostalgia

I’ve been thinking a lot about Clare’s birth lately. Partly because her 2nd birthday is coming up next month and also because we have another birth around the corner. I wish I could remember the time before we knew there was something wrong, but I can’t. I try so hard to conjure up those feelings I must have felt in my pregnancy with Clare – hopes and dreams and expectations of what having a little girl would be like, of what watching Jamie with a sibling would be like, of being a perfect little family of four. Even now, being pregnant again, some of that blissful ignorance of pregnancy is gone. Because now I know these things CAN happen to us, that we CAN be the people who are the statistic, that 1 in 10,000. Don’t get me wrong, there is still much joy and anticipation and wonderful hopes and dreams with this pregnancy, but everything is colored a little differently now. I am so excited for the birth of our baby boy and for Jamie and Clare to have a little brother. Jamie cannot wait to have a brother (since we have a bunch of friends who are also having babies right now, hopefully he will not be shocked when Baby Simon comes out and pretty much does nothing but sleep, cry, and eat). Yet, at the same time, I feel guilty when I look forward to having another baby, to experience a typical babyhood again. I feel as if I am saying Clare’s babyhood was not enjoyable - but hey, it was rough! So I find myself remembering Clare’s birth often – those last hours and moments before the world was painted a different shade for us.

Clare’s pregnancy was pretty easy. Other than the normal pregnancy aches and discomforts, I had no medical issues. Nine days after my due date had come and gone, I agreed to be induced. I was not keen on the idea of Pitocin (the drug used to stimulate contractions), so my doctor tried other more natural methods first. When none of that worked, I was given Pitocin. You never forget any of your children’s births, but Clare’s is still in the forefront of my mind. Her delivery into this world was so different from Jamie’s. My labor with Jamie was a grand total of 24 hours (almost to the minute). It was long and slow. I had an epidural and all the women in our family hung out in the delivery room all day with us (the men were there, too, but they were vanquished to the waiting room towards the end). It was one grand party. When the evening snack cart came by, everyone loaded up with chips and soda, and then settled back in to watch the end of the show. After almost three hours of pushing, Jamie was born. Everything seemed very drawn out. Labor was physically exhausting, but not all that painful (once the epidural kicked in). I was joking and laughing up until the end.

Clare was a whole different ball game. Pitocin kicks your labor right into high gear with no build-up. From the beginning, contractions were strong and painful. I had an epidural during Clare’s labor as well, but it made no difference. Progress was still somewhat slow, however. My dad had to catch a plane two hours away that night so he was frequently asking my doctor when she thought the baby would be born. He didn’t want to miss the birth, but he also didn’t want to be driving at midnight, if it was going to take all night. At 8:35pm, I was still only at 7cm. My OB stated that we were looking at an April Fool’s baby at this point, so my dad decided to leave. Clare had other plans, though (a pattern we saw from the beginning!). She must have figured enough was enough. Who cares that Mommy isn’t fully dilated? Who cares that Grand Dad just left the hospital? Who cares that the OB wasn’t back in the room yet? Who cares that the nurses kept saying “don’t push”? She was coming! At 8:52pm (only 17 minutes later), Clare was born. In many ways, I feel as if that is part of who Clare is. Nothing happens until she’s ready, but when she’s ready, watch out!

I am entering that phase of pregnancy where I am ready to do this all over again. I am big and uncomfortable (I think we’re headed for a nine-pounder). Two of my close friends have already given birth (and the third, with our newest godchild, is any minute now… we’re still waiting for the phone call!), and seeing those sweet new babies makes me long for my own. Labor is hard, but I am actually looking forward to it. (I think…)