Change

Change is so hard. Our family has experienced many changes over the past couple months, especially with moving to a new house and some family issues. Now we are facing another change – this time in our spiritual life.

Our beloved parish priest is leaving our church next week. He has been assigned to a post in the Vatican (yes, in Rome!). Monsignor Anthony has been a tremendous source of support for our family over these past months. He was one of our first visitors in the hospital after Clare was born. When Clare’s heart defects were diagnosed, he willingly moved her Baptism closer, so we did not have to wait so long to have her baptized. He has come to our house and blessed Clare and given her the Sacrament of Anointing of the Sick before every hospitalization. He visited us in the hospital in Boston. While Clare was having her open heart surgery, Monsignor Anthony was leading a pilgrimage of fellow parishioners in Italy. As Clare was in surgery, they were praying for her in Assisi (Clare is named after St. Clare of Assisi). He has always had a smile, hug, and kind word for Jamie. We attended a farewell barbecue for Monsignor Anthony a couple weeks ago, and before we left, Jamie sat on his lap so they could talk. We have been so blessed to have Monsignor Anthony in our lives.

I know Monsignor Anthony is destined for great things, but I am saddened that his journey in life will no longer be part of our journey here in Manchester. Under his wing, our church has grown and flourished, as has our faith. I know both our children hold a special place in his heart, and that he will always be with us spiritually. And if we ever make it to Rome someday, we will have our own tour guide at the Vatican! Thank you, Monsignor Anthony, for being a true friend to our family. Thank you for loving Jamie and Clare – for showing a little boy firsthand how Jesus loved all the little children. Thank you for holding our little girl in your prayers time and time again. May God watch over you as you begin your new journey. We will miss you.

They're Here! They're Here!

At 14 months old, Clare is finally cutting her first tooth. After waiting so long for this event, I expected something grand for the big arrival – fireworks, a parade, maybe a brass band or two. What I did not expect was that Clare would cut FOUR TOP TEETH AT THE SAME TIME! But that’s exactly what she’s doing.

Clare has been cranky on and off this past week, and we have noticed her fingers are always in her mouth – two good signs of teething. Yet since we’ve thought Clare was teething since she was three months old, I really didn’t think this was the real thing yet. At dinnertime tonight, she just wouldn’t settle down and wouldn’t eat. Shawn gave her some Tylenol thinking that maybe her gums were bothering her. The Tylenol did the trick, and Clare ate dinner. When I was getting Clare dressed for bed, I happened to look into her mouth and saw her top gums. (Okay, I was able to look into her wide open mouth because Jamie was giving her licks of his lollipop.) That’s when I saw them – four top teeth breaking through those gums. And from the looks of it, the four bottom teeth are not far behind! No wonder she was a cranky little girl. I guess if you’re going to wait 14 months to get your first tooth, you might as well work on four (or even eight) of them at the same time.

Little Inia

Clare has become a Little Inia. Exactly what that is, I have no idea!

Auntie Chrissy gave Clare swim lessons for her first birthday (complete with an adorable pink bathing suit!). We enrolled her in the YMCA baby class (called the Shrimp Kipper Inia Class) five weeks ago. It's a stretch to say Clare LOVES swim class, but she does seem to enjoy it. The first week, she was all business and very serious about this new experience. We have taken her in a swimming pool twice before, but both times, they were hotel pools and a little chilly. Clare was definitely not fond of those experiences. She has become a huge fan of bathtime now (loves to bounce and splash in her little tub). From taking Jamie to swim classes when he was a baby, I knew that the YMCA pool was the temperature of bathwater, so I thought Clare would at least tolerate it. Now that we have been doing swim for a few weeks, Clare enjoys it more each time. This morning, she kicked and splashed and even smiled a couple times at her teacher.

I have learned that there are all kinds of therapy out there. Occupational therapy, physical therapy, speech therapy, music therapy, pool therapy, equine therapy, developmental therapy, and who knows what else. I have heard other parents say their child receives as much as 10 hours of therapy a week. Clare has one hour of occupational therapy a week. That's it. And right now, that's okay by me. Clare's OT, Jessica, provides great feedback on how Clare is doing. Clare lights up when Jessica walks in the door. Jamie also loves Jessica because she always has a new game or toy just for him. In the busyness of our life, OT guarantees that Clare will have that time devoted to helping her develop (don't get me wrong - we work on Clare's skills outside of therapy, but it's not that structured). Clare's one hour of OT is something we all eagerly look forward to. But I doubt I would feel the same way if our life revolved around therapy sessions. There may come a time down the road when Clare does require more structured therapy. Again, that's okay if that's what she needs to function in this world. But I like the idea of having a little more freedom, especially since we've slowed down on doctor's appointments. I also think it's good for Clare to not have her life revolve around therapy sessions and doctor's appointments. She may be a child with a disability, but she's still just a child and should be able to do the normal things kids get to do.

For now, Clare gets so much out of doing less structured activities. She loves going to Jamie's playgroup because she gets to watch the other kids. (I am learning that peer pressure can be a wonderful thing sometimes! Clare may just want to crawl since she's now the only baby not mobile!) Jamie is a great form of therapy (and entertainment) for Clare. He loves to talk to her and try to get her to mimic him, with sounds and actions. We sing songs and dance around the living room, which Clare loves. And we are enjoying swim class. It is a relaxing time for both of us (even though it's Shawn in the photo, I take her the majority of the time). Clare loves to watch the other babies and hang out in the warm water. And if she gets an occasional kick or splash in there, that's an added bonus. Hey, isn't that physical therapy??

Happy Anniversary...

to us!

It’s been one year (and a few days) since Clare was diagnosed with Williams Syndrome. And it’s almost been one year since we started this blog. In the beginning, I did not know how long it would last. I just liked the idea of journaling my thoughts and sharing them with family and friends. I didn’t know if blogging would be a phase. If we would get too caught up in every day life to maintain it. If I would run out of things to talk about. Apparently none of that happened! Because we’re still here. (And hopefully it’s a good thing that we’re still here!)

What a roller coaster year it has been. Ups and downs. The biggest downs by far have been Clare’s open heart surgery and those rocky days in the Cardiac ICU as well as learning of the recent deaths of two children with Williams Syndrome (one right in the next town over from us). Those are the moments that hit us hard. It brings it back to the forefront (with a slap in the face) how serious Clare’s condition can be. In those moments, I do allow myself to be scared and worried. I cry and hold Clare tight and pray to God that He never takes my precious girl from us. And Clare will usually look at me like I’m crazy lady and touch my face with one little finger. Then I’ll remember why this is all worth it, and that the ups far outweigh the downs. I could start to list them, but the list would be endless. Like this beautiful face!

Clare had her follow-up with her geneticist today. It was nice (in its own way) to have an appointment with a doctor where we waited almost 10 times longer for the doctor to arrive than the amount of time spent with the doctor himself. Nice, except for the restless baby! We are on track with Clare as far as medical care goes and what we should be watching out for, so the geneticist is giving us an entire year before we follow-up with him again. An entire year! Wow!

When Clare was first diagnosed, there were many dark days. I remember other parents of children with WS telling me, "The beginning days (and months) after the diagnosis are bad, but it does get better." That's hard to believe and wrap your mind around when you are still staggering from an incredible blow. When all your plans, hopes, and dreams for your new sweet baby seem destroyed. But you know what? It does get better. It HAS gotten better. I finally feel that Clare having Williams Syndrome is not the end of the world for her - or for us. It's just the beginning of the possibilities that are out there. Maybe that's because we are now open and accepting to the idea that we don't always get to make the plans of how our life is going to go. We can dream and hope and pray, but in the end, it's up to someone else, God. And I am glad He's in our corner!

The Beauty of Holland

I read the following a little while after Clare was diagnosed with Williams Syndrome. At the time, I thought it was an interesting comparison, but I was still in the depths of struggling with the new diagnosis and what it would mean to our life. I re-read it again today on another blog by a parent of a child with Williams Syndrome. Today, it struck me deeply. It expresses my feelings so well on what this journey with Clare and Williams Syndrome has been about so far. So to borrow from the words of another, here is the story:

The Beauty of Holland
by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.""Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

A Closer Look

A couple weeks ago, we were in the backyard and I noticed a bird had built a nest on the second floor windowsill of our bedroom window. The nest was an ugly, trailing mess of branches and leaves. We have been fighting hornet nests all over the place, and I was appalled by the sight of that ugly nest on our house. I did not want to start fighting with birds as well. I am not a bird fan. Our house is near a small body of water, so there are bugs everywhere. Consequently, there are birds everywhere as well. Did I mention I am not a bird fan?

I immediately went upstairs, intending to knock the nest off the window. I opened the window and pushed at the nest with my hand. It seemed fairly secure. I was getting ready to give it a harder shove, when I actually looked into the nest. This ugly, trailing mess of branches and leaves was smooth and round on the inside. It was beautiful. It was perfect. I marveled at how something so ugly on the outside could be so beautiful on the inside. I stopped my demolition, planning to show Shawn and Jamie the nest.

The next day, I looked out the window and there was a robin in the nest. My movement startled her, and she flew off. That’s when I saw the little blue egg in the nest. I am ashamed that I was going to destroy the nest because I thought it was ugly. How often do we do that? We make rash judgments based on appearances, without taking the time to take a closer look. I am as guilty as the next person. Sometimes we just need to stop and look at things in a different way. One of my biggest fears about Clare’s future is that people will do this to her – make a judgment about her based on how she walks or talks or acts and not take the time to take a closer look at the beautiful person she is.

Life is messy. Life can be ugly. But life is also beautiful… and perfect. And our robin’s nest? We now have three eggs in the nest. Mommy robin sits on them every day. We keep the blinds closed over that window and are careful not to make sudden movements, so we don’t scare her off. We are anxious to see if the baby birds hatch and are grateful that God has given us a glimpse into this amazing little world.

Happy Mother's Day!

S~ Today we honor our mothers. As I sit here, while Teresa and Clare are still sleeping, and Jamie is having his breakfast, I am in awe of the mother my wife has become. Ten years ago, when I was in college, I met someone who took my breath away. She was so full of energy and character, it didn't take me long to fall in love with her. Yet, when we were crazy kids in college, no real talk of spending our lives together, I had no idea the blessing I was receiving. All I knew was that this girl I was dating was a lot of fun, and I was always happier when I was with her, so I married her. You have no way of knowing the woman you marry, what kind of mother she would turn out to be. Teresa has surprised me in so many ways, and I am so thankful to have someone who is so strong in my life. This past year, with all that we have gone through, God has shown me that my wife is a rare treasure. She has juggled numerous doctor's appointments with spending quality time with Jamie; she has spent twelve days in a hospital room (no small feat) taking care of Clare; she has managed a difficult medication schedule, and still got Jamie to his playgroups on time. She has sacrificed so much of her personal time to make sure the kids are getting the attention they need. She has watched her precious baby lying in an ICU and fighting for her life, while comforting me and helping me to be strong. I am not sure if I am communicating how truly a special person Teresa is. I would be lost without her. So today, on Mother's Day, I thank God for my wife, who has exceeded all my expectations as a mother for my children. She is such a blessing to me, Jamie, and Clare. Happy Mother's Day, Teresa! I love you, and I thank you for all that you do for me and the kids!

Walk With Me

We are participating in the Easter Seals Walk With Me on June 8, 2006.

We did the walk last year as a family and were joined by a group of friends as well. At that time, Clare had just begun occupational therapy through Easter Seals. It is hard to believe it is already a year later! Look how far Clare has come in just one year! We had a great time walking last year and are looking forward to participating again. We were just starting out last year - now we know what a difference Easter Seals makes in the lives of so many people, young and old. We are blessed to have the services of Easter Seals and the support of all their generous donors.

If you are interested in sponsoring Clare and our family for the walk, you can click on the link on the right side or go to www.wwm.easterseals.com Once on the site, Sponsor A Walker and search for Teresa Rouillard. There you will find our walk page.

Thanks for all your support!

Mother's Day

I have been thinking a lot about Mother's Day. Suggestions on how to celebrate your mother and spend Mother's Day are everywhere. My favorite blogs and magazines have all had ideas, tips, readers' comments, etc. When Shawn asked me what I wanted for Mother's Day, the first thing that came to mind was exactly the first thing on the majority of moms' lists on everything I read - time to myself. The words popped out of my mouth before I could stop them. But then I thought, is that really what I want for Mother's Day?

Mother's Day IS a day to pamper mom. And, after this year, I could use some pampering! (ha ha) But Mother's Day is also about celebrating the mother and her role in the family. After all, I would not even be a mother without Shawn, Jamie, and Clare. Why should the best gift be about being alone and away from these three people who make me a mother and who I love best in this world? I want us to be together and enjoy being a family and relish my role as mommy.

Do I want some time to myself? Absolutely. But not on Mother's Day. On Mother's Day, the best gift will be about being together and being a mother.

(So, Shawn, if you were considering that gift certificate for a spa pedicure - I still want it. I'll just go the next weekend.)

How Blessed We Are

I had a bad day a couple days ago. Some stuff going on with our extended family combined with Clare being extremely fussy and clingy (which is not a common occurrence) and Jamie being fresh and disobedient (which, unfortunately, is a common occurrence these days), added up to some bad moments. One of those days when you question the decisions you made in your life, are tired of dealing with one problem after another, and are so thankful when the kids go to bed.

After that long day, I settled down to catch up on my e-mails. I had an e-mail from someone who has been through (and is going through) so much with one of their children. To make a long story short, the challenges in my life seemed small comparatively. Now I do not believe in making comparisons about who has the tougher lot in life. It's not a competition. Our life is our life, and the obstacles we face are personal and daunting to us, whether big or small to the outside world. However, after catching up on this child's story, I thought, how blessed we are. How blessed I truly am. It really caught me up. I did have a tough day and it took a lot of strength, patience, and praying to get through it. Yet at the end of the day, my two children were safe, snug, and healthy in their beds. That's a blessing in itself. Maybe we'll have another tough day tomorrow. But the blessing is that we are going to have another day together tomorrow. Another day to play outside, take a walk, cuddle and read books, (have a few time-outs), and be together.

What's New?

We've been AWOL again lately. I am blaming it on moving, unpacking, settling in, and enjoying that spring has finally arrived! (I promise not another post about moving!)

So what's new in Miss Clare's life? She is doing so well right now! (But... still no teeth!)

We've been fairly doctor-free for a while now, other than her weight checks every two weeks. Clare does not return to see her cardiologist and undergo a sedated echo until June. I admit I am eager to see how the appointment goes. It's already been six weeks since Clare's last cardiology appointment, and we have never been this long without knowing what's going on in that little heart. We have another six weeks to go. I am curious, but not worried, since Clare is obviously thriving right now!

Clare's weight gain is still going incredibly slow. She gained a couple ounces between appointments last time. It's still not what the doctors want to see, but at least she's gaining. I don't think her GI and pediatrician will ever be happy unless she gains five pounds in one month! Shawn and I are happy with her progress, though. She is self-feeding now and loves it. She prefers that over being spoon-fed pureed foods. In fact, the only person she will condescend to let feed her is Shawn! The quantity of foods she will finger feed herself is not great, but she will try to eat anything we put in front of her. And we've been more daring with Clare as to variety than with Jamie, which is kind of funny. Clare enjoys meal time (for the most part), but she will let you know when enough is enough. We are teaching Clare baby signs, and the only sign she responds back is "All done." She "says" it loud and clear when dinner is over!

Clare continues with her weekly OT sessions. Her goals right now are crawling and increasing upper body strength, as well as beginning some vestibular activities. These are Clare's favorites because it involves flying through the air, bouncing on a ball, rolling continuously, swinging on the swingset, and hanging upside down. She does not enjoy her crawling/upper body strength activities as much, but is increasing her length of toleration, which is good. Crawling is still probably months in the future, but selfishly, I am content with that. I don't know if I am ready for two mobile kiddos yet! In June, Clare will have her one-year evaluation with the Early Intervention Program. This will involve not just OT, but PT, speech therapy, and an educator as well. We'll outline goals for the next 6-12 months and get an idea of how Clare is doing developmentally.

Clare is such a happy little girl. Big smiles throughout the day. She has started hugging and loves to hug Jamie. He'll come near her, and she will reach out to him and wrap her little arms around his neck. I know I am biased because I am her mother, but Clare is so sweet and loving, and we all just love her so much!

Taking A Walk

After dinner tonight, we took a walk as a family. We used to do this often in our old house, but our street was a busy cut-through street. So we always put both kids in the stroller and walked across a very busy road to get to the cemetery near our house. It may sound creepy to some people, but we loved walking in the cemetery. No cars, very peaceful, and Jamie could get out of the stroller and run around. But it was always a hassle actually getting to and from the cemetery.

Tonight we took our first walk through the new neighborhood. Shawn suggested that instead of using the double stroller, we let Clare ride in Jamie's push car and Jamie could ride his new tricycle. I was very skeptical that either child could handle an extended walk in these modes of transportation, but agreed to give it a whirl. Both Jamie and Clare loved it! This was the first time we put Clare in the little car. You could tell she felt like such a big girl. She gripped that steering wheel and got down to business. Occasionally, she got daring and let go of the wheel to clap her hands to let us know how happy she was. She smiled and babbled throughout our entire stroll. It was wonderful!

Have I mentioned how much we love our new house and neighborhood???

I took Clare to have her professional photos done today for her first birthday. My baby is no longer my baby. When I was looking at the shots the photographer captured, I realized that Clare was becoming a toddler (well, almost - she actually needs to start toddling first!). I know it goes by so fast (I just have to look at Jamie) and that Clare will be walking before we know it. Right now, it seems like she will never crawl, never mind walk, but those days will come. Then my baby will really be gone forever. It is bittersweet. Tonight when I was putting Clare to bed, I held her a little bit longer before I laid her in the crib. And I thanked God for giving me these last precious moments with her while Clare is still a baby.

Happy Easter!

(a day late)

We hosted our first Easter dinner and egg hunt at our new house this year. I admit it was a little crazy and ambitious on our part since we only moved in five days before, but it was worth it. It forced us to get our new house in some sort of order, plus we had lots of fun coloring 48 eggs, making up Easter baskets, and grilling two legs of lamb (yummy!).

We are still moving into our house and unpacking boxes, but we already love being here. It is going to be an incredible house and neighborhood for both Jamie and Clare. Jamie has already discovered how much fun it is living on a cul-de-sac because now he can ride his tricycle in the street instead of just up and down the driveway. Shawn put the swingset up on Saturday, and Clare got her first real taste of swinging. She's been in the swing at the playground before, but those swings are too big for our little peanut. To say Clare enjoyed the baby swing is a huge understatement. The minute she sees the swing, she starts grinning from ear to ear. When I put her in it for the first time on Saturday, she started laughing. Laughing out loud! We have not really heard her laugh since she started a couple weeks ago. What a sweet sound!

Making Waves

Clare started waving today - another milestone! Auntie Erin was visiting, and Clare waved good-bye to her. Then, of course, she realized what a hit it was and waved again and again.

Clare also pulled to stand (with a teensy bit of help from her Mimi) on Sunday. Shawn and I were super busy moving out of our house, so we didn't get to really see Clare perform this new trick. So I'm not sure if it counts! (Just kidding, Mimi.)

Home Sweet Home

Short but sweet since life is busy busy busy as usual!

We are in our new home and loving it, despite all the work! Jamie is enamored with his new dinosaur bedroom, and Clare loves having her own room. (Now she can sleep and sleep and sleep!) More thoughts later (maybe much later) after we’re unburied from all our stuff.

Restless

It's one of those nights when I just can't sleep. So what better way to induce drowsiness than to stare at the computer screen?!

We are madmen around here these days. Clare's birthday extravaganza has come and gone (it went too fast), and now we're down to the serious business of packing. We are moving in less than a week! We are super duper excited! We have been waiting for this move for so long now.

We originally had our house on the market in May/June 2005 - pre-WS diagnosis and pre-any hospitalizations. In the midst of numerous house showings, Clare was diagnosed with Williams Syndrome and we received the scary news that she needed her first cath. We took our house off the market temporarily until the "craziness died down." We did not know that would be about seven months later! But here we are finally, "Sold" sign in the yard (well, actually "Sale Pending" - apparently "Sold" signs are a thing of the past) and counting down the days. Counting down to a bigger house, nicer neighborhood, and #1 in my book - Clare can have an actual bedroom! We have a complicated juggling act going on right now with Clare sleeping half the night in our room and the other half in Jamie's (the charm of a snug, 2-bedroom house). It's a hassle to say the least. I always had this wonderful idea that my children would share a room from early on. I shared a room with either one or both of my sisters until I was a teenager, and I believe that sharing a room is a positive learning experience for kids. Unfortunately, due to feeding issues, sleeping issues, and 2 am meds, sharing a room with Clare is not as fun (or easy) as I dreamed it would be - for Jamie or for Mommy and Daddy! So hopefully everyone will sleep better once we move into our new house.

And speaking of feeding issues... Clare had her one year visit with the pediatrician today and her faithful GI popped his head in to check on her as well. Unfortunately, due to that lovely stomach virus we all had last week, Clare lost weight. I was not surprised to hear that because Clare has barely eaten any solids since she was sick. I know it will take her little tummy a while to get over that virus. But it would have to happen right before her weight check! So we are going back in two weeks for another weight check.

If we are AWOL for the next few days (weeks? hopefully not!) it's because of our upcoming move. See you all in our bigger house!

Let Her Eat Cake

What's a first birthday without birthday cake?

Clare almost didn't get birthday cake. Since she's not doing so well with solids beyond pureed foods, Shawn and I debated the whole birthday cake issue. We knew she wouldn't be able to eat any of it. We discussed it, and I even posted a question on the WS listserve I belong to asking for suggestions. We received a whole slew of ideas - pudding, custard, yogurt. Then I received one e-mail that put it all in perspective for me - simply said, "Let her eat cake." How could we be so stupid??? Of course, just let her eat cake. Who cares if she can't actually eat it! Why would we let those first birthday memories (not to mention photo ops) go just because Clare may not technically be able to eat the cake? After all, not too many first birthday babies actually eat their cake. Most just play around in it and make a mess.

As you can see from the photo, that's exactly what Clare did. I made her a simple yellow heart-shaped cake with plain vanilla frosting. And then we let her go to town. And boy did she ever! The first thing Clare did was to scrape off some frosting, then flip the cake over. She had a great time and even put some cake and frosting in her mouth. She loved it!

Again and again, I am hit with a wake-up call that I need to let the WS side of Clare's life go sometimes and just let her be a baby without second guessing everything. Maybe I will finally learn that lesson by the time Clare turns two!

Happy Birthday, Clare Bear!

Top ten things Clare has taught us over the past year:

1 – The most important thing in this world is family.
2 – The best thing to smile about is spontaneous dancing in the kitchen. Even when there’s no music playing. Even when it’s Daddy dancing (remember Elaine from Seinfeld?).
3 – Keep smiling even when the dancing is done. Your crazy older brother will act crazier for just one smile. Your aunties, uncle, grandparents, cousins, just about anyone will do anything for you. And it will make Mommy and Daddy feel that every bit of pain endured is worth it just to see that wonderful smile.
4 – There IS a silver lining in every rain cloud.
5 – It’s okay to have crazy hair!
6 –The anatomy of the heart and how it works (we knew we should have paid attention in 5th grade science class).
7 – Hospital food can be quite tasty. Unless you eat it for 12 days in a row.
8 – Don’t listen to what others say you can’t do.
9 – Never give up. Even when those toes seem so far away, keep trying – you know you can get them in your mouth if you just stretch a little bit more.
10 – There is always hope. There is always joy. There is always laughter. Even if you have to wait a year for it.

Happy birthday to the sweetest, most amazing girl in the world. Thank you for teaching us the most important lessons about life. We are blessed to be your parents. We love you so much!

Laughing Matters

Clare laughed tonight! Not a "do you think that was a laugh? it sort of sounded like a laugh? was it really a laugh? maybe she was starting to cry" kind of laugh. But an honest-to-goodness giggle, I might even call it a chuckle, from her belly laugh. After waiting 364 days to hear that laugh, it was the sweetest sound in the world!

The Optimists Club

First off – I have to let everyone know that we are finally up and about again. The entire family was slayed by the dreaded virus, but all are feeling better now! Thank goodness because we have a birthday party to organize!

We have received so many comments about how positive Shawn and I are and how we see the good in every situation. I am appreciative that people say this because there are MANY times when I do not feel so positive and good about everything. However, on the whole, we do belong to the Optimists Club (not really, but I am sure there is such a thing).

Quite frankly, we’ve dealt with some very tough stuff over the past 12 months. We thought we had dealt with enough tough stuff during our engagement and early years of marriage – long distance relationship while dating and engaged, death of two beloved grandmothers, moving to a new state away from family and knowing no one, devastating miscarriage, and struggle with infertility. When I look back over that list, I often think that God was preparing us for the road ahead. Our faith in God and our faith in each other and our marriage were tested with these “smaller” challenges to prepare us for the bigger challenges that lay ahead (I say “smaller” in quotes because each of these challenges were very real struggles for us at the time).

There are days when all I want to do is crawl back into bed and wallow in self-pity and misery. Maybe I would if I did not have two precious children who need me to get up and face life. And I have a choice – to either face life with gloom, self-pity, and negativity or face it with joy, humor, and optimism. My children are the greatest gift God has given me. For their sake alone, I choose optimism. I choose to be cheerful (most days!). I choose to not give up. I choose to keep on smiling. How can I not?

Has this past year been easy? Definitely not. Have we doubted and despaired at times? Absolutely. But we have persevered, and here we are, almost a year later. There can’t be triumphs without the struggles. This journey so far has been a journey of many parts – some rocky, some smooth; some winding where we have no idea what’s around the bend, and some straight where we catch glimpses of the future. But at the end of this first year, we have the most important thing to show for this journey – we have our beloved Clare who, right now, is thriving and loving life.

Babies, Bubbles, & Bikinis

Clare graduated to a big girl tub last week. Now that she sits, we got out our inflatable tub and tried her in it. She loves it! It took her one bath to realize that splashing is fun.

I was reading Clare's scrapbook yesterday, and I was looking at a page with photos taken pre-surgery and, thus, pre-scars. I forgot what Clare's chest used to look like - that beautiful unblemished baby skin. Now she has a three-inch incision scar down the center, two circular scars below that where her chest tubes were, and three more smaller scars where the pacer and ground wires were. It saddens me at times when I see her chest because she will have these scars for the rest of her life. That perfect skin is gone forever. I feel like I did not cherish it enough before it was gone. It sounds silly but you tend to take little things like that for granted. I used to always rub her chest and tummy when I dressed her or changed her diaper. After her surgery, I did not touch her there for the longest time. Partly because I thought that area might be sensitive, but also because I did not want to touch it. For the first time the other day, I touched Clare's scar. I ran my finger down the entire length. Then I rubbed her chest and belly like I used to do. And you know what? It still felt like Clare's chest - with some added character to it. It's this character that makes us who we are - not necessarily our perfections, but our imperfections and what we do with them.

Maybe Clare will never be a bikini model, but brave warriors have battle wounds - her scars show what a tough cookie she is!

House of Plague

The dreaded "bug" that has been sweeping the country (okay, at least southern NH, as far as I know) has hit this household. Officially as of 10pm last night when Jamie woke up vomiting, we became one sick house. Then Clare started up this morning. Oh, it's so not fun when the kiddos are sick - especially at the same time.

I had naively hoped we had avoided this bug because we were in Boston at the hospital when most of our friends were down with it. After discussing this with one of my friends yesterday (whose family was hit a couple weeks ago), when Jamie and I said bedtime prayers together last night, I specifically thanked God that both Jamie and Clare were healthy and strong. With Clare just coming home from the hospital, packing and moving, and getting ready for Clare's birthday, I was so grateful we had missed this particular stomach virus because I didn't think I could handle the added stress. Well, apparently, I am about to find out!

So far, we have done seven loads of laundry. Every pair of my pants were either pooped on or vomited on. (Lovely, I know!) It was a great excuse to wear my pajamas for most of the day. The big kicker is that all our extra bedding and clothing is packed! After the first incident last night when Jamie's toddler bedding needed to be changed, I found some twin sheets that had resided in a garbage bag in our crawl space for the entire five years we've lived in this house. I am not sure how clean they were, but we were desperate. Then when those got soiled, we took the sheet from Clare's crib and found an old blanket to go with it for Jamie. The poor kid! And poor Clare - she ended up sleeping back in the playpen in our room, and I went without a pillow so Jamie could have mine.

We are a little concerned about Clare because she is so little, and we do not want her to become dehydrated. It's very crucial for her narrowed blood vessels that she stays well hydrated. So we are watching her closely. Jamie, on the other hand, seems to be doing much better today (especially since he is in Hour 4 of his nap). I am now praying that Shawn and I escape the bug. Or, if we don't, that it comes and goes quickly so we can get back to life and packing.

Where Are Them Toofers?

Clare has not gotten her first tooth yet. Her gums are swollen, and I look every morning to see if that first tooth has popped through. She has moments of crankiness and clinginess when I think her gums must be bothering her and Tylenol seems to help, but still no tooth!

We're taking bets on whether or not Clare will get her first tooth before her first birthday (which is in 8 days and counting). Although, as Shawn always says - with West Virginia and Maine DNA combined, Clare will be lucky to even get one tooth!

Jamie's Milestone

S~ Yesterday, Jamie hit a milestone. Normally this would excite us, but this was a milestone that I was not ready for. Yesterday as Teresa and I were heading to the mall to return some bedding, I heard a tiny voice in the back of the van say, "Dad, (not Daddy, Dad!) do you have any money?" I thought this wasn't supposed to happen until they were teenagers! So knowing he wanted the $1.75 to ride the carousel, and knowing that he was too young to understand the Money Doesn't Grow on Trees lecture, I gave him the money. I am a little worried what this might bring where as he is so young and has already figured out who has the money. Maybe I should tell him that I had to get the $1.75 from Teresa!

Back to the Drawing Board

We met with Clare's GI this week as well. I didn't post this earlier because I was savoring the good news from Clare's cardiologist. Her GI appointment was before the cardiology appointment, so I was still on my cardiology high earlier!

Unfortunately Clare's GI follow-up did not go as well as her cardiology one. She has not gained any weight in a couple weeks, so even though she was tracking along her weight curve previously, now she has stalled again. So it's back to the drawing board to come up with ways to beef Clare up! We were excited about the dietician's assessment of Clare, but the GI does not agree 100% with the dietician. The dietician said there was no need to increase the fortification of Clare's solids. The GI wants us to fortify them with 6 times the amount of formula powder as before! This means that for every tablespoon of pureed food Clare eats, we add one tablespoon of formula powder. I hate when you get conflicting opinions from the specialists because who do you listen to? We are following the GI's advice because he has seen Clare multiple times and knows her medical history as opposed to the dietician who saw Clare once.

When we made Clare's dinner the first night following the GI's new menu, it was so much powder and so much food. Shawn and I agreed that Clare would never eat all that especially with the amount of powder in it. I thought about cutting down on the amount of powder because it seemed like an extreme amount, but went ahead with it because I wanted to give it a real try. And you know what? Clare liked it! She polished off her entire dinner and has done so every night since. The powder is supposed to be tasteless, so I don't think it's the taste. Maybe Clare has an easier time with the consistency now? It just goes to show that you never know what will work. And you can't admit defeat before you even try.

Clare is going to follow-up with the GI in two weeks when she has her one year pediatric visit. In the meantime, we are doing our best to bulk her up. We've started giving her three meals a day (although she is not crazy about eating at breakfast or lunch yet) and are going to try her on whole milk soon. Her feeding technique has gotten so much better, and she barely dribbles any out now. She can pick up Cheerios and rice puffs and feed herself. She still has a very sensitive gag reflex, and we have had some cases of vomiting, but hopefully that will improve with time as well. Although getting her to consume more calories is a struggle right now, we are pleased with her progress in her technique so far.

Light at the End of the Tunnel

We can see the light! (There's some song with that lyric, "I can see the light. I can see the light." which has been stuck in my head all afternoon.)

Clare had her follow-up with the cardiologist here at home. She had a chest x-ray and echocardiogram done as usual. Her cardiologist is super-pleased with what she saw. Her blood pressures were terrific in that the pressure taken on her arm matched that of her leg. Her blood pressure was on the high side, which is normal for Clare, but the pressures being the same means there is no blood flow problems through Clare's aorta. Which means that the cath was very successful. The cardiologist went over the entire cath procedure with me, and I saw the photos and video of the dilations.

Sidebar: I did meet Clare's interventional cardiologist at Children's Hospital (he's the one who performs the caths and is the chief cardiologist at Children's), but he did not go over the procedure with me. He literally walked into Clare's room post-cath, didn't introduce himself or say a word, checked Clare out, then on his way out told me to watch that she doesn't become "febrile." I knew who he was because his photo hangs on the wall on the cardiac floor. But this was the first time he had personally come to the cardiac floor to check on Clare, so I was stunned speechless and didn't say a word either. Luckily, I know what "febrile" means (fever). Clare's cardiologist explained to me that this doctor was a brilliant man, but one that rarely speaks. He had no bedside manner, but who cares, as long as he is an expert at what he does!

So we went over the cath. It was a big procedure - her biggest catheterization yet. In retrospect, that is why she had such a tough time the night after her cath. Seven of Clare's pulmonary arteries were dilated (which is a lot - usually it's 3-4), and the dilation of her aortic coarctation was a huge dilation. Her lung scan post-cath was that of a typical lung scan. So even though Clare still has many occlusions throughout her pulmonic side, her blood flow is being evenly distributed to her lungs.

The cardiologist also showed me the two arteries that were completely occluded in Clare (which is the fancy cardiology term for "blocked" - it means that there is no blood flow through these vessels). One is on her left pulmonary side, and the other is her right femoral artery. In both cases, collateral vessels have developed around the arteries, so that the blood is getting where it needs to be, just taking a different route. This is not a big deal in her pulmonary side. However, as I stated after Clare's cath, the occlusion of her femoral artery means that the doctors can no longer gain access there for her caths. The only access they have now is through her left femoral artery. If, in the future, the left side also becomes occluded, then the doctors will have to go through Clare's jugular. Not something we want to happen, but it can be done.

Where's the light you ask? Clare does not need to go back to the cardiologist for three months! Wow! When she goes back, she will have an echo done under sedation so they can get a really good look at her heart. I am so happy we have reached a point where Clare can go three months between visits. The cardiologist (who tends to be conservative, which I believe is a good thing when it comes to heart issues) is not as positive that Clare can go a year without needing another cath, but she is at least going 3-4 months again. So I can see that light at the end of this VERY long tunnel. It may just be a faint glimmer, but I know it's there.

Clap Happy

Once Clare started clapping, she can't stop! It is so cute! She claps all the time now. She loves doing it. Maybe she likes the feeling of bringing her hands together. Maybe she likes the slapping noise. Maybe she likes the big grins and cheers she gets every time she does it. I can't describe the feeling of watching your child do something so simple, yet so incredible. And it's just clapping! I can't imagine how I'll feel when Clare starts walking or talking.

As Clare gets older, we notice more and more that she is "special." It's so hard to say that word sometimes. When she was a newborn, she did normal newborn stuff. But now that she's approaching her first birthday, it's obvious that she is different. Clare doesn't laugh, she doesn't crawl, she doesn't pull up, she doesn't really eat solids, she doesn't babble. The list goes on and on. And she's started to do some "special" things. Like rocking and head bobbing. Her therapist explained it's a way for Clare to organize her brain and figure out where she is in space (plus she probably likes the sensation) - two things that can be tough for kids with sensory issues and low muscle tone. And it provides stimulation for her. When Clare started doing it, I kind of freaked out because to me it seemed like it was a (and I am going to use the dreaded word) "retarded" thing to do. After discussing it with her therapist, I have since calmed down about my freaking out over it. Because Clare may be mentally retarded. Most children with WS are to some degree in the technical, scientific, medical definition of "mental retardation." It is so hard for me to admit that, but there's the stark truth. And, if she is, and needs to do stuff like that, we need to be there to help her. So the therapist showed us how to give Clare some deep pressure input. We can do this at times throughout the day to give her that physical stimulation she needs and do it especially when she starts rocking or bobbing. And it's okay that Clare does that. She is going to have to learn as well how to function in this big bad scary world.

I listed what Clare can't do. However, the list of what she can do is so long, I couldn't name them all. She lights up a room with her smile. She makes everyone she meets fall in love with her. She inspires so many with her story. She brings joy to us each and every day.

If You're Happy and You Know It....

Clap Your Hands!

Clare started clapping today for the first time. It sounds like a simple thing, but it really is a big deal occupational therapy-wise. We've been clapping in front of her quite often over the past few weeks. I clap her hands with her, and we play lots of patty cake. Today, Clare must have been happy because after Jamie clapped, she clapped back! I love Clare's face when she does something new. Jamie and I were cheering like madmen. Clare just looked at us with this little half smile on her face like, "Yeah, I knew how to do this all the time."

Clare seems to be back to her old self again other than sleeping a lot. After her three-hour nap yesterday, she did a nine-hour stretch at night (a first - and I admit I did the stretch with her and forgot to wake up at 2 am to give her meds!), then took a four-hour nap today. So I think Clare has gotten all the beauty sleep she needs. Now if only Mommy could say the same....

We see Clare's cardiologist next week for a chest x-ray and echo, so we'll see if she concurs with the hospital's opinion that Clare should be cath-free for a year. Maybe that's why Clare is so happy!

Sleeping Beauty

We are home! I love those words!

Clare was so wiped from her stay that she fell asleep as Shawn was carrying her to put her in the stroller to wheel her out of the hospital. She slept for three straight hours - from the stroller to the car, through the drive home, and up to her crib. She didn't wake up until Jamie came home. (I think she heard her big brother's voice and that's what prompted her to finally wake up!) She must have known that her sweet brother had picked out a bottle of duckie soap for her at the Children's Museum and was eagerly waiting to give it to her.

This is Clare conked out in the hospital crib after a long night of not sleeping!

We Need Some Sleep!

Clare had a rough night last night. Due to the amount of balloon dilations done and dye contrast used in her body during the cath, the doctors were concerned about her having a fever or having some kidney issues from the dye. She was kept on Heparin, antibiotics, and Tylenol throughout the night. However, it was obvious that Clare did not feel well and in the wee hours of the morning, she starting getting feverish and her heart rate was very high (180-200). The doctors decided to go ahead and give Clare a blood transfusion. She finally got a transfusion from 5-9 am this morning. Because of Clare's fever and the transfusion, the nurse came in every hour to check vitals, so neither Clare nor I got much sleep last night. This morning, we are waiting for Clare to have some blood work done to check her renal function and crit count again and a lung scan done to check her lungs post-cath. The transfusion was what she needed since her fever is gone and she is feeling much better. She is sleeping peacefully now. Clare is still scheduled to be discharged this afternoon, so we are looking forward to going home!

Cath Complete

We are exhausted, so just a brief note that Clare's cath is done. She did beautifully. The doctors did a lot of dilating, but the dilations were successful and things look great right now. If all goes well, she may not need another cath for a year! I will write more when we get some rest!

(Later) My little peanut is asleep, so I have some time to put some thoughts down about today. What a day. All in all, it was a pretty good day, albeit a very tiring day. The cath was a long one, but, as I said, the doctors were able to successfully dilate Clare's right and left pulmonary arteries as well as her aorta where the surgical patch ends. They were so succesful in the aorta that the pressure gradient is down to almost zero (zero being the best). Clare almost ended up with another stent in her pulmonary side, but the cardiologist was able to dilate that section enough that a stent became unnecessary. Thank God for these doctors and their skill. Not having a stent placed means that there is no ICU stay and Clare can be discharged tomorrow.

Right now, Clare is pretty wiped. She has slept all afternoon, waking briefly to nurse. She is in some discomfort, so she has been given some pain medication. The only real negative part of her cath is that the vein the doctors use as access is no longer working. Because of repeated entry, a blood clot has formed there. Clare is in no danger from that clot because her other vessels will work around it, but the doctors can no longer use that vein. Therefore, they have to gain entry through the artery, which is a bigger risk. The doctors did use the vein on her other side as well, so Clare has more healing to be done in that area. She lost a lot of blood, but not enough to warrant the risk of a transfusion, so she's very pale and sleepy. This should all improve over the next couple days.

The real exciting news is that Clare's pulmonary side looks fairly "good." She still has much narrowing throughout her smaller branches on that side, but the doctors really cannot do too much that far out. Her proximal arteries (where the stents are) look much better because of the stents. Therefore, she does not need another cath for hopefully at least a year. The thing that could bring Clare in sooner is if the coarctation of her aorta develops again. So she will continue with close follow-ups with our cardiologist at home. This has been the best news we've received yet! Although we know Clare's pattern is to require intervention sooner rather than later, we are excited at the possibility of a year between procedures!

First Update

We received our first update. Clare is doing well, and the doctors had a chance to look at her heart already. She does need both her pulmonary arteries and descending aorta dilated, so that is what they are concentrating on right now. I am not sure how long that will take or if anything else beyond dilation will be done. But so far, so good. Nothing unexpected.

Cath Day

Today is cath day. We are at Children's Hospital awaiting the start of Clare's catheterization. My mom is currently walking Clare around the floor because she is quite fussy from not eating for 6+ hours now. Clare is second case today, which means that we have to wait for the first patient's cath to end before they come to take Clare. Unfortunately, that is at no set time. It could be in 5 minutes, it could be 2 hours from now. The doctors have to assume the earliest, so Clare was cut off from food at 3am. Hopefully she will be brought in soon because our little girl is very grumpy!

Clare has "graduated" in many ways at the hospital. Being second case means she is one of the older children scheduled for a cath. She gets an actual crib bed now (not the infant bed anymore), since most kids her age are crawling and pulling up. (So the bed comes with side rails that can be pulled up quite high and a tent on top for those who are climbers.) Clare made that crib her home last night. She had toys and blankets scattered all over the place and scooted herself around the bed. When I woke up this morning, she was curled all the way at the top of the bed sound asleep against the pillow I propped up there so she would stop hitting her head on the bars. She was so sweet and peaceful.

Clare also discovered this trip that leads, O2 monitors, blood pressure cuffs, and IV lines are all great toys. She has chewed, sucked, pulled, and banged on all of them. The blood pressure cuff makes a terrific noise when banged against the side of the metal railing. She sat in the bed for about 30 minutes yesterday just playing with her wires. It was very cute!

It's hard to believe it's been 4 months since we've been here. We have made ourselves at home again. Hopefully this will only be "home" until tomorrow. We will keep the blog updated as the day progresses.

Thank you for all the prayers!

One of Those Days

It was DEFINITELY one of those days. When you wonder why you got out of bed at all.

It was just an insane day. And, of course, it was the day before we head down to the hospital, so I had a zillion things on my to do list and did none of them! I joined a new playgroup and had every intention of going there this morning - never happened. We (and by "we," I really mean "I") just couldn't get our act together this morning. Then Clare needed a nap, and before I knew it, it was noon. The playgroup was long past, and I had twenty minutes to feed Jamie lunch, get Clare up, and get them both out the door to Jamie's doctor's appointment. (Yes, sometimes Jamie has a doctor's appointment as well!)

The early afternoon fared a little better because both kids took a nap, then we ran some errands. But when we got home, I slammed the van door closed on Jamie's left foot... Jamie's SHOELESS left foot. I was hurrying to get the kids out of the house to run our errands, so neither of them had shoes or coats on (now I am really starting to feel like a terrible mom). But the van was toasty warm and neither of them were leaving it while we were out. So the door incident happened, and Jamie was beside himself in pain. I almost cried myself, I felt so bad. He kept crying "Mommy, you hurt me." His foot was so bruised and swollen, I worried it was broken. (I slammed the door hard.) The pediatrician's office wanted to see him right away to do an x-ray. When I explained to Jamie about x-rays and broken bones, his cries turned to, "Mommy, you broke my bone!" Shawn came home and took Jamie to the doctor's, so I could stay home with Clare. (Who had been crying herself during the entire time we ran errands and then the door incident, so she was quite worked up as well by now.)

Jamie and Shawn got home from the doctor's around 7 pm, and we finally ate dinner. Shawn's mom is staying with us tonight to care for Jamie while we're gone tomorrow, so we had a nice, relaxing dinner with Mimi (who, bless her, washed all my dishes that piled up throughout the day). The good news is that Jamie's foot is not broken, just badly bruised. His first words when he walked back in the door? "Mommy, you didn't break my bone!" with a big smile on his face. Then dinner ended, and Clare (who was sitting on my lap) promptly vomited all over me. Oh geez! Seriously, what more could go wrong??

Now it's the end of the day, and I still have not done a thing on my to do list to get ready to leave in the morning. Once Shawn and Jamie came home, I could have done some stuff, but it was much more fun (and important) to play with Jamie on the bed, being silly, and reading books by flashlight in the dark. And it was worth my scrambling around now to spend a few moments earlier snuggling with my freshly bathed Clare before she went to bed. The day wasn't all bad. I also saw my friend's newest little boy (only 8 days old!), and he is precious. A newborn baby is just so sweet, there's nothing like it. It hits home again how fast kids grow. I can't believe my own baby boy turned three a month ago and my baby girl is turning one in three weeks. So even though I ended up not accomplishing what I wanted to do today, I got to do some of the stuff that matters most (although I could have done without almost breaking Jamie's foot and the vomit).

Precious Moment

Precious Moment of the Day:

Over dinner, I asked Jamie who his best friend was, expecting him to reply Ethan - his best bud that he wrestles and laughs and is absolutely loud and crazy and BOY with; or Elizabeth - his "girlfriend" who he shares somewhat quieter moments (not really!) of reading and exploring (especially in their imaginations).

Jamie's response? Simply stated - "Clare."

These are the moments that make your heart melt.

Those Scary Doctors

We knew it would happen eventually, and the time has arrived. Clare is afraid of the doctor's office. Little by little, we've been seeing that she is much more cognizant of what is going on at the doctor's and dislikes all of it! Yesterday she had her endocrinology appointment. As soon as I laid her on the bed to undress her, she started crying. She cried throughout the entire appointment and stopped crying almost immediately once I dressed her at the end. Now the endocrinologist is probably the least invasive of all Clare's doctors. He weighs her, measures her, and listens to her heart; but, other than that, all he does is ask questions about her growth and development. He does order blood work to check her thyroid and calcium levels, but that's at a separate location at a different time (and since we're going down to Boston next week, Clare's just going to have all her labs drawn there), so Clare has no pain or discomfort at these appointments. She doesn't care - she is done with the doctor's! It probably didn't help that she went to the doctor's the day before as well to get her monthly RSV-antibody shot (which was painful). Yet, even at that appointment, she cried from the moment I undressed her - well before any shot was given. Poor little peanut! I am nervous how she will be at Children's Hospital next week. It's been four months since her open heart surgery, and she has really grown a lot since then! It's great that she has the cognitive awareness of her surroundings and what going to the doctor's entails. However, at the same time, I can't help but wish sometimes that she was still just three months old - when she would receive a shot, cry momentarily, then forget about it almost immediately. Growing up is so hard!

Crazy House

We live in a crazy house. I am sure all mothers of young children (and maybe all mothers?) say that! But we honestly live in a crazy house sometimes! Our craziness is increasingly crazy these days because we are selling our house (actually sold yesterday - whoo hooo!) and, thus, moving. Plus we're getting ready to go back to Boston next week for Clare's catheterization. Add to that Shawn being out of town for a couple days, and we were truly crazy today!

Today was a good crazy, though. We definitely have our bad crazy days (umm... yesterday with a very tired, whiney, grumpy, tantrum-prone 3-year old), but today was one of those days that get chalked up to being a good day. Nothing special happened. But both Jamie and Clare were in such good moods all day. We were silly and relaxed. Right before bed, I was getting Clare's room ready, so I put her in the crib to keep her safe while I did that. However, she really wasn't safe from the antics of her crazy brother. Jamie came in to inform me that he was "playing with Clare" and "sharing his animals with her." I told him that was wonderful and then thought I better go see what he meant. And this is what I found! Only Clare's face was visible under all the animals. But she was grinning away at her brother! I love the crazy. Sometimes it drives me crazy, but I wouldn't change it for the world!

Beautiful Children

My children are not only famous, but beautiful as well.

James Michael and Clare Therese

A Visit With the Feeding Specialist and Dietician

We met with the dietician and feeding specialist today. (Finally! After 8 weeks of waiting.) It was all good news! Hooray for Clare!

After an hour of talking, taking measurements (including a fun little pinchy device that measured Clare's fat storage under her arm and on her back - needless to say, she hated that!), and watching Clare eat, they concluded that Clare was right where she should be and doing great. She is not where a typical almost 11-month old would be, but we knew that. She doesn't do most things a typical 11-month old would. But her eating skills are on the same level as the rest of her development. And that's primarily what the feeding specialist looks at. If her other skills were more advanced (such as walking, talking, etc.) but she was not eating well, then there would be concern. But Clare's evenly across the board where she is in all areas. Clare has only been eating solids for less than three months now, so the feeding specialist said her progress was good so far.

After taking all her measurements, the dietician was also satisfied with where Clare was. She explained that although Clare is small and off the typical weight chart, she is not really as small as she seems or unhealthily small. Would they like her gain weight? Yes, she only weighs 15 lbs. at 11 months old. But Clare also has a small head (only in the 10th percentile), and head weight contributes a lot to an infant's overall weight. Plus, with Clare's low muscle tone, she is not going to have that muscle weight either that a typical baby would, and she never will. That is why the dietician measured Clare's fat stores, which were at the 50th percentile. That is exactly where they should be. Both specialists said to continue with what we're doing. There's no need to worry about supplementing Clare with any more than she's already getting. We are to naturally increase her quantities as she gets older, but we don't have to do any fancy stuff like add flaxseed oil or other fattening agents to Clare's food. They are both going to come back in a few months to follow-up with Clare.

And, as you can see in the photo, our little peanut is doing such a good job with her sitting. She can sit independently for long stretches now before falling over. And she doesn't fall like she's losing balance - she falls because she's tired and just lets herself go!

Shark Boy

S-It is amazing how much fun 1 dollar can buy you. This is Jamie and Jamie is excited by all things with teeth. But not just the normal kind of teeth that either you and I have, but the big sharp scary teeth. God love little boys and all the fun and adventure that come with them!

My Kids Are Famous

What a pleasant surprise to read another blog and see my kids on it! This is the link to my aunt Sara's blog, the creator of Clare's Angel (www.saragarska.com). We were excited to have Sara visit us from Texas a couple weeks ago. She met Clare for the first time and saw Jamie for the second time (she had not seen him since he was a baby). We had a wonderful visit, and the kids loved Sara.

To see my famous kids, go to Sincerely, Sara:
http://sincerelysara.blogspot.com

My Funny Valentine

Happy Valentine's Day!

Having said that, we're not big Valentine's Day people in our house. Shawn and I exchange cards and we bought books for Jamie and Clare, but, other than that, it's low key here. In our house, you don't need one special day to show your love for each other. We try to do that every day in little ways. And what's not to love about that adorable baby girl!

But I have to say that it was pretty sweet waking up this morning to find 32 Valentines hidden around the house from my crazy, romantic husband!

Our Little Patient

Clare is a little better today. She was so grumpy, clingy, and tired all day yesterday. Shawn took her to the pediatrician's yesterday afternoon (he is such a good husband - Jamie was napping, so he said he would take Clare so I could rest, too), and it turns out Clare also has an ear infection. She is on antibiotics for her ear infection. Her cough is less croupy, but still bad, and we had a rough night. But she is definitely feeling better today and is on the mend.

We heard from the hospital, and Clare's cath is scheduled for March 8. Other than being sick right now, she has been doing so well at home again. It's been a wonderful three months (since her surgery) to watch her grow and develop her skills. She sits more independently now, talks, eats better, and is more interactive. Clare is such a sweet, happy girl!

Nighttime Excursion

Clare and I were in the ER last night until 1 am because of croup. Clare has had a runny nose for a couple weeks now, but I figured it was a cold or teething and didn't worry too much about it. She's been fine otherwise. Then, last night, I could hear her coughing in her crib. If your child has ever had croup you know what that barking cough sounds like - it is very distinctive. Jamie had croup a number of times as a baby and toddler, so I knew the drill. Warm, steamy bathroom or cold night air. Soon, however, Clare's coughing worsened, woke her up, then she started crying. Before long, Clare developed stridor as well and was having trouble breathing, so we were off to the ER.

It's amazing how fast you get through the ER with a little baby having trouble breathing and the words "heart condition." No waiting at registration, no waiting at triage, no waiting in the waiting room. They brought Clare right in and hooked her up to oxygen. Her saturation levels were in the low 90's, but once she was on oxygen, they went right back up to 100. Her body temperature was very low, so they wrapped her in heated blankets. By this time, she had calmed down and was able to breathe a little easier. (And now she was wide awake - yea for me!) She was so adorable swaddled in a huge blanket, curiously watching all the ER activity. So many nurses stopped by just to peek at her. One nurse commented how little she was to already have a "zipper." I had no idea what she was talking about at first. Then I realized she was referring to Clare's surgical scar. I thought that was cute - a zipper!

Clare was diagnosed with croup and stridor (brought on by her seemingly harmless cold), which was no big surprise. She received a shot of steroids to help her breathe easier. The drug they gave her lasts for 18 hours, so it provided some relief to Clare today as well. This is the first time Clare has actually been sick. She was so cuddly and clingy (and grumpy!) all day today. Very sweet to have this little warm body attached to you at all times, but also very tiring, especially for the sleep-deprived parents. She still barks occasionally, but the steroids must be working because she sounds much better. Thankfully, she is not contagious, so we don't have to worry about Jamie getting it or be quarantined.

Welcome to the fun world of winter colds, Clare!

Dancing with my Star!

S~ The very first post I wrote on this blog, I wrote about how I was upset about the potential of missing things like walking Clare down the aisle or going to a Father/Daughter dance. Well, yes I will still miss that, but God has given me something better. When Clare gets really fussy, only two things can calm her down. One is nursing, the other is dancing to Rod Stewart (his new stuff, not the old) with Daddy in the livingroom. So it looks like I get my Father/Daughter dances after all. Thank God!

Baby Talk

Clare started "talking" today. After months of waiting, she is finally talking! Well, using consonants anyway.

Clare is a fairly quiet baby (especially compared with her somewhat loud-mouth 3-year old brother - okay, non-stop chatterer!). She does say "ooooh" and "aaaah," but that's about it. Then this morning, she woke up and decided today was the day to expand her repertoire. By the end of the day, Clare was also saying "na na na," "ga ga ga," and "da da da" (the latter one is only due to the fact that Shawn repeated it incessantly throughout the day because he is determined these will be Clare's first words). And she was talking almost all day long. She just didn't stop the baby babble!

For those of you unfamiliar with the delays of Williams Syndrome, the typical age for actually speaking words for kids with WS is 3 years old. So we expect Clare to be delayed in this area. We are starting to teach her sign language in the hope that we can help her communicate prior to being able to do so verbally. But we were so excited to hear her make some more progress! And she sounded so gosh darned cute with her new vocabulary!

Porky Pig.... Well, Almost

Clare had her weekly check-up at the GI today. She gained four ounces in 9 days (and three of those days she didn't eat because she was under the weather)! Whoooo hoooo! This is the kind of weight gain the GI wants to see. We were excited to hear this for two reasons - 1) It means we don't have to do any major intervention (such as a feeding tube) prior to her cath this month, and 2) Clare doesn't have to see the GI for a month now (as opposed to weekly). Hopefully she will continue this pattern of weight gain.

We're still waiting to hear from the hospital when her cath will be. We finally heard from the feeding specialist and nutritionist, and they are coming out to see Clare in three weeks. Clare continues to improve with her sitting - sitting for longer intervals and self-righting when she starts to sway off-balance.

Happy Birthday, Jamie!

S~ So, I know this blog is primarily to follow the story of Clare and keep everyone updated on her progress. However, today we are highlighting our other little trooper in our family, Jamie. It is hard to believe that he has turned three today. It has been the best three years of our life.

Yesterday, we had his birthday party and hired a face painter (hence the Ninja Turtle). I know I am probably very biased, but Jamie is such a wonderful kid. Sure he has his typical three year old moments (and sometimes we feel they are a little more than typical) but, all in all, he is such a great kid! So instead of me telling you why I think he is so great, I will relay a few short stories that tell me why he is so great.

The most recent story happened when he went and spent time with his Mimi and Papa. They took Jamie and his two cousins, Jasmine and Alex, to the Disney on Ice Show. As every good grandparent should do, Mimi and Papa (let the spoiling begin) said the kids could each pick out a souvenir. After the show, Mimi said she had a little more money so each kid could get one more souvenir. Instead of getting something for himself, Jamie wanted to get something for Clare. This story really gets to the heart of who Jamie is - a sweet sweet kid. I am also very proud of this little guy, because as much as Teresa and I thought we were doing a good job sheltering him from all the pain and stress of Clare, we realized we weren't capable of hiding everything. The day of Clare's open heart surgery, we called Jamie to check in on him and see how he was doing. After he talked to Mommy and then talked to Daddy, he asked to talk to Clare. I explained to him that Clare was with the doctor who was making her boo boo better. He insisted on talking to Clare, and as much as I tried, I could not persuade him otherwise. So I handed the phone to Teresa who spoke to Jamie in a high squeaky baby voice... and he was fine. I realized then that he understood in his own way, that something was wrong with Clare, and he needed reassurance she was all right.

So, that is Jamie, and I love him with all my might. Jamie, you are too young to read this but someday I hope you do. I love you. Your Mommy and I are so proud of the little boy you are and also, in many ways, the little man you are. You make us so proud of you each and every day. We thank you for being funny, and sweet, for being genuine and strong, for being a goofball and making us laugh when you know we need to. In this turmoil of a year, you have been a safe place for your Mom and me and, for that, we cannot shower you enough with Heffalump kisses. Happy Birthday, little guy, and I hope you had a wonderful day!

A Good Session

Clare had an awesome occupational therapy session this morning. I feel like we swing back and forth between her medical status and her developmental status. Right now, we're coming to another interventional point in her medical status, but developmentally, she is doing some great stuff. That's what keeps us going sometimes!

Clare is sitting independently more and more. She is starting to balance herself when she teeters and is even reaching for toys while sitting. We have been playing a rolling game with Clare. She knows how to roll, but rarely does it. So we roll her across the floor in one direction, then roll her back in the other direction. At first, she protested this "game," but now she will roll willingly when we start her since she knows what to expect. She is also becoming stronger when weight-bearing on her legs, and is bringing her hands to together to bang toys (next comes clapping!). Her therapist has noticed a decided head tilt over the last month which is getting worse. We have to keep exercising and strengthening her neck muscles, so she doesn't develop any tightness in one side. So far, she has not, so hopefully we can keep it that way. That's the great thing about therapy - we can catch these things before they develop into a full-blown issue.

P.S.

P.S. For those of you tracking Clare's weight gain (ha ha ha), she gained 2 ounces in 10 days, so she's up to 14 lbs, 8 oz. That's still averaging only 1.5 ounces per week, so her GI was not impressed. We saw him yesterday before the echo. He said last week that as long as Clare does not have any procedures coming up, he's comfortable with seeing where things go with Clare's weight without any intervention. Hopefully her upcoming cath will not affect that decision. We see him again next week for another weight check, so I am sure we will discuss our options then.

Positive Thoughts

Positive thoughts... positive thoughts... that's what my wise husband keeps telling me.

Clare had her monthly sedated echo today. First off, the little stinker WOKE UP 20 MINUTES INTO IT!!! She was sedated with chloral hydrate, which should last about 90 minutes. Nope, in the beginning of her echo, she turns over, opens those big blue eyes, and looks at the radiologist with a big smile! Fortunately, the radiologist (who knows Clare very well) had already obtained a lot of data, and we were able to keep Clare fairly happy to quickly finish the echo. Unfortunately, since the chloral hydrate did not work effectively, from now on, Clare will have to have her echos under anesthesia, not sedation. Anesthesia is riskier and a bigger procedure.

Secondly, Clare's data was inconsistent. In general, her pulmonary side has not changed since her December echo, which is good. However, her descending aorta, where her surgical patch ends, has gotten worse. How narrowed is unclear because Clare's measurements, pressures, gradients, all those fancy numbers were inconsistent. So Clare is going to undergo her fourth cardiac catheterization in about a month. Once again, the cath will primarily be exploratory to evaluate her descending aorta and see what's going on. At this point, it is unclear what type of intervention will be needed for her aorta. Clare may have it balloon dilated during the cath. Hopefully this will be all she needs.

Yogurt Queen

I can't really say Clare is making great strides with her eating, but she has found an obsession - yogurt! It's to the point where Clare doesn't really want to eat any of her other solids, especially not the yucky oatmeal anymore. She doesn't eat tons of the stuff (maybe one tablespoon a day), but she loves to eat her yogurt at dinner followed by her dessert of yogurt drink. And the mess she makes is incredible! Luckily for me, Clare has also decided that Daddy is her preferred feeder, so he has the responsibility to clean that face after her meal!

Cheers for Clare

Clare sat independently for 5 minutes today! And she did this twice! Yeah! (I even got the second time captured on video tape.) Jamie had his "girlfriend" Elizabeth over to play, so the two toddlers cheered Clare on. I don't know who was cuter - Clare looking around with a surprised look on her face like "what am I doing?" or Jamie and Elizabeth jumping up and down like maniacs and clapping their hands!

Date Night

S~Well, Teresa and I finally got to go out for a night to ourselves, first time in 9 months (not including when Clare was in the hospital). Special thanks to Christina! So as we saddled up to the bar at Olive Garden for some drinks and appetizers and did what every couple does when they are out for a romantic night, just the two of them, we talked about the kids! Actually we only talked about them for a little while and then forced ourselves to talk about something else. But as we were talking about Clare and everything that has been going on the last nine months, we both came to a realization of one of God's gifts. You have heard the old phrase: "Enjoy them now, because they grow so fast!" This is so true. Jamie is already turning his 3T shirts into belly shirts and is talking a mile a minute. It seems like just yesterday he was a baby just learning to crawl. We realized what a special gift God gave us in Clare. He has allowed us to enjoy the baby in her for a little bit longer than if she was a typical kid. What I mean is that at Clare's age, Jamie was crawling, saying Da Da Da Da, eating with his hands, and just trying to figure so many things out. Clare still has a lot of the baby things in her. She still needs to be held for almost everything. She is just starting to explore what her hands and feet are for. She is working really hard on sitting up. In the past, this has been very difficult for us because who wants their child to be delayed? We see other kids passing her developmentally. We see kids younger than her doing so much better at little things that it hurts. I have had such a hard time dealing with the developmental portion of the Williams. But last night we came to the conclusion that we should relish this extra time God has given us with the baby side of Clare. She won't always be like this. In a few years she may catch up developmentally. Then she will be where Jamie is now - asking us questions a mile a minute without taking a breath. So from now on when we see a baby who is maybe younger than Clare or the same age and can do so much more than Clare can, we are not going to be upset by the developmental delays of Clare, but instead be thankful that God has given us one more month of babyhood, one more snuggle in our arms, one more joyful smile as she pounds her cups against the T.V. tray. Kids do grow so fast, and these a days, a lot faster. So I'm thankful my Clarebear is helping us to slow down, helping us to hold on to our baby for just a little while longer.

The Big Mac Diet

What do you do if you can't get your breastfeeding baby to beef up? You beef up yourself! That's right - I am on the Big Mac Diet, per orders from Clare's GI.

Meeting with both Clare's pediatrician and GI today has made me feel a little bit better about what's going on with Clare's weight. They are both very supportive of my breastfeeding (although they both were honest and said it would be easier if Clare took a bottle as well), and no one is discouraging me from stopping. Yesterday, I was feeling more down about everything. Today, I know that if someone told me to stop nursing Clare, I would refuse to because I do know in my heart that I am giving her what's best. Especially since that's her main source of nutrition! Can I help it if my sweet little girl wants her food directly from the source??

Clare gained 1.5 ounces this past week. The GI isn't thrilled with that amount (he wants to see her gain 3-4 ounces per week), but he said at least it's a step in the right direction. We are going to continue fortifying Clare's solids with formula, try to syringe-feed Clare fortified breastmilk (I think we're admitting defeat with the bottle), and I am going on my Big Mac Diet. If Clare will only take breastmilk from me, the only way to fortify that milk is for me to eat a high-fat diet. So, basically, add butter to everything, drink whole milk, and indulge in Big Macs at least twice a week. Maybe not the healthiest diet for me right now, but if it works for Clare, it works for me. The GI also gave me some tips on spacing out Clare's feedings to produce the highest quality milk (I think he was a lactation consultant in his previous life!).

I sent Shawn out for a Whopper and onion rings for lunch (okay, it's not a Big Mac, but I prefer Burger King). So forget about losing those last 20 pounds of baby weight!

Having A Tough Time

Clare has been officially termed "failure to thrive." I loathe that phrase. Because she IS thriving. Maybe she's not gaining weight, but she has come so far in the last two months in other ways. I think that's why I am having such a hard time with this whole feeding issue. We have noticed such an improvement in her since her surgery. Her energy level is up, she is so happy, she sleeps fairly well. Her therapist even swears she got a little giggle out of Clare the other day. But I feel as if we're getting nowhere with Clare's feeding. She was doing so well on solids, but has regressed over the last week to the point where at some meals, she refuses to eat. And, of course, this is a crucial week where we need her to gain some weight to show the GI that Clare is gaining, just slowly. I also can't help but feel personally responsible for Clare's lack of weight gain. I know part of that is irrational. I don't know if other breastfeeding mothers feel the same way, but I do feel responsible for how Clare grows because she is nursing. I can't help but wonder sometimes if I did Clare a disservice by exclusively nursing her for so long and not at least introducing a bottle from day one. But I know I can't second guess myself. I know that I had no idea what the future held for Clare and could not predict that we would be at this point. And there are many formula fed babies who are termed "failure to thrive," so I cannot blame myself. But I am really starting to hate the question - "Could your milk supply have gone down?" like it is my fault.

Tomorrow we have our second GI appointment. I pray that Clare has gained at least one ounce. Then maybe I'll feel better.

Sitting Pretty

Clare sat independently for about a minute today! Big hooray!

Clare's therapist has been working hard with Clare on sitting, and Shawn and I have continued this work outside of therapy. We bought Clare a Bumbo seat (not to be confused with the Bumble, Jamie's favorite character from the "Rudolph" movie) which she loves. The Bumbo supports her snugly so she can sit up and play the way she wants to play without having to use all her energy for trunk control. We have noticed that, probably due to her low muscle tone, Clare cannot usually work on two things at once. Take eating - she cannot hold herself up in the high chair and then concentrate on using her mouth muscles to eat. So she eats in her bouncey seat. Same with sitting - she either sits in the Bumbo or we support her ourselves while she plays. It allows Clare to play at her age level so she continues to develop cognitively. Of course, we still focus on her sitting minus the Bumbo, but it's a great support for her. It's been awesome to use so we can play together as a family without Clare having to lay there.

However, today, she sat without support for what seemed like an eternity (and most likely was only a minute!) and played with her Fisher Price aquarium bowl with Jamie. She didn't even seem to realize that I had taken my hands away (I had been supporting her hips). I was so excited!

For more information on the Bumbo seat, go to www.bumboseat.com.

Weight Troubles

At the GI specialist's yesterday, Clare actually lost an ounce from the day before. Hopefully it was just a fluke thing and that her weight is not actually going down. The GI is concerned about her lack of weight gain. Although she is healthy right now, if she gets into a rut with not gaining weight, she will continue in a downward spiral and grow weaker and weaker. Clare is being tested for a bunch of different gasto problems. In the meantime, the GI gave me some tips on fortifying the little solids she currently eats to up her calories. We are also going to try introducing a bottle again (although I am not hopeful given Clare's track record and stubborness). This way we can fortify breastmilk as well for her. The key is to increase her calories.

Clare has no symptoms that there is something else going on with her internally. The GI believes that her poor weight gain is due to the fact that, at her age, she needs more calories than she can physically take in (because of her low muscle tone). This is why she nurses constantly. She is doing better eating solids (and her variety is increasing), but she tires of eating after a couple tablespoons. But we are going to continue onward. I am trying so hard to keep a positive attitude here because, if this is unsuccessful, then she will most likely have an NG tube reinserted through her nostril. I really don't want to come to that step.

Introducing Doctor Number Six

Clare is seeing yet another new doctor tomorrow. Not counting her eye and ear doctors (who we only see once a year), Clare is meeting doctor #6 - a pediatric GI specialist.

Clare had her follow-up with the geneticist today. He is pleased with her overall progress, but is very concerned about her poor weight gain. We were so excited a couple weeks ago that she had gained a few ounces, but now her weight has plateaued again (she has not gained any weight since that appointment). Since she has been eating solids for a few weeks now, the doctor is surprised and concerned that she has not gained any more weight, especially since she is now two months post-surgery. So we have a referral to the GI doctor. Luckily, he had an opening tomorrow, so we are getting in right away. We have applied to the State (through Clare's Early Intervention provider) to have a swallow specialist and nutritionist come out to the house to take a look at Clare, but hopefully this will make things go faster. (Although we are extremely grateful for all the free services provided to us, it does take forever to get anything accomplished through the State.)

I am kind of stumped as to what the plan will be from here. We are trying to up Clare's caloric intake through solids, but she will only eat so much. We are having a little more success with the sippy cup, but not enough to supplement. And I personally feel that Clare nurses ALL THE TIME! The geneticist is concerned that Clare is not properly absorbing the nutrients. So we await what the GI says...

Happy New Year!

Happy 2006!

As we look back at 2005, it was a LONG year. We had so many ups and downs, challenges and rewards. I wouldn't trade a moment of it. Even that dark night after Clare's surgery when I thought our worst nightmare was becoming reality. 2005 made us a stronger family. It made Shawn and I stronger in our marriage and stronger in our faith. 2005 gave us the most beautiful baby girl who has taught us so much in her first nine months here on this earth. And I know she has so much more to teach us.

Happy New Year! We are all looking forward to what 2006 will bring.

Our Other Angel

This blog is primarily dedicated to Clare and our family's journey with her through Williams Syndrome. But we do have another sweet angel in this house as well. I know I don't have to explain how loved our beautiful Jamie is by all who know him. Jamie is going to be three at the end of January (hard to believe!), and we are so proud of the little boy he is growing up to be. Jamie is a wonderful big brother to Clare. I could not want a better brother for my little girl. Yes, we are working on sharing (both toys and his parents' attention), but Jamie loves his sister so much.

Clare woke up from her nap this morning on the grumpy side. Jamie sat with me on the couch and talked to Clare (in a high voice, as Mommy and Daddy usually do), gave her hugs and kisses, and shared his toys with her (especially his prized dinosaur light necklace) until she started smiling and blowing raspberries at him. Just as Jamie loves his sister, Clare loves Jamie. She adores her older brother. I hope Jamie and Clare always have a great relationship, and that he is always there for her, especially when she's grumpy and needs someone to make her smile!