We had a small birthday party for Clare today - just our family and the children's godparents. Clare is easily overwhelmed by a lot of noise and people, so we wanted to keep it low-key. On Friday, our playgroup got together and they had a present and cupcakes for Clare. All the kids wanted to sing "Happy Birthday" to Clare, but I explained that it scared her (Clare hates "Happy Birthday" and "Rock-A-Bye Baby"), so they whispered it instead. Very cute!
So I knew today that singing would be off-limits. This morning, I came into the living room with the video camera to capture our newly-turned-two-year-old on film. As I came in, I said, "Happy Birthday, Clare!" in a nice, bright, chipper voice. Apparently it was too much like singing for her because Clare burst into tears. It took a little while to calm her down after that! Poor kiddo! I am glad we made the decision to keep Clare's party small because she enjoyed every minute of it, but was getting overstimulated by the end. (As was I, but at least I can handle it better!) I wanted Clare to have fun at her party, not be scared. There was nothing fancy - just pizza, cupcakes, and our closest loved ones. That's all that really matters anyway. And tons and tons of presents! Clare loves to unwrap presents and was eyeing the big pile of gifts throughout the party. She was ecstatic when it came time for her to open them and look at all her new goodies. She had a little competition from the other children at the party, but her newest word is "mine," so she used it often! It's nice to see your child being feisty and sticking up for herself, especially since it's easy for Clare to get walked over (both literally and figuratively) because she cannot crawl or walk.
It was a gorgeous day, and we provided bubbles for all the kids (one of Clare's favorite activities), so it was heavenly to spend time outside enjoying the spring sunshine, the swingset, and the bubbles. I love having parties at our house. It is so comfy to have your home filled with laughter and love. We are very blessed to be surrounded by both in abundance. Clare had a wonderful birthday.
I have a little mental list that I am checking off as events happen (Clare's birthday, Easter, that kind of stuff). I am due in five weeks and that seems like an eternity away sometimes. But as we reach events on my checklist, I cannot believe I am ONLY five weeks away! My baby is now two years old, so we are getting closer and closer to welcoming our new baby.
Saturday, March 31, 2007
Happy Birthday, Clare!
Dear Clare,
It is hard to believe you are two years old already. I still think of you as my baby in so many ways. But then I look back at the photos of you as a baby and I realize what a big girl you have become. We are so blessed to have you in our lives. This blog has detailed (sometimes minutely) what a rough road some days have been, but I hope we have also shared with you the wonderful times, the sweet times, the silly times, and the lovely times we’ve had. Without you, we wouldn’t be on this journey, and I am grateful for every day we get to spend together. You bring so much joy to our entire family. We love you so much, Clare Bear! Happy Birthday!
Love,
Mommy & Daddy
You Are Loved (Don't Give Up)
By Josh Groban
Don't give up
It's just the weight of the world
When your heart's heavy
I will lift it for you
Don't give up
Because you want to be heard
If silence keeps you
I will break it for you
Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved
Don't give up
It's just the hurt that you hide
When you're lost inside
I'll be there to find you
Don't give up
Because you want to burn bright
If darkness blinds you
I will shine to guide you
Everybody wants to be understood
Well I can hear you
Everybody needs to be loved
Don't give up
Because...you are loved
Don't give up
It's just the weight of the world
Don't give up
Everyone needs to be loved
You are loved
It is hard to believe you are two years old already. I still think of you as my baby in so many ways. But then I look back at the photos of you as a baby and I realize what a big girl you have become. We are so blessed to have you in our lives. This blog has detailed (sometimes minutely) what a rough road some days have been, but I hope we have also shared with you the wonderful times, the sweet times, the silly times, and the lovely times we’ve had. Without you, we wouldn’t be on this journey, and I am grateful for every day we get to spend together. You bring so much joy to our entire family. We love you so much, Clare Bear! Happy Birthday!
Love,
Mommy & Daddy
You Are Loved (Don't Give Up)
By Josh Groban
Don't give up
It's just the weight of the world
When your heart's heavy
I will lift it for you
Don't give up
Because you want to be heard
If silence keeps you
I will break it for you
Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved
Don't give up
It's just the hurt that you hide
When you're lost inside
I'll be there to find you
Don't give up
Because you want to burn bright
If darkness blinds you
I will shine to guide you
Everybody wants to be understood
Well I can hear you
Everybody needs to be loved
Don't give up
Because...you are loved
Don't give up
It's just the weight of the world
Don't give up
Everyone needs to be loved
You are loved
Tuesday, March 27, 2007
You're Fired
Clare had her GI follow-up last week. This was the first time she had seen the GI since before her eating strike almost four months earlier. After the appointment, Shawn and I were in agreement that it was time to either stop seeing a GI all together or find a new one.
On a personal level, Clare's GI is a super nice guy. Very friendly, warm, and great with the kids. I am not saying he is incompetent medically, but we have not been happy with Clare's care lately. We are very unhappy with how the GI office as a whole handled Clare's eating strike. No one ever suggested we bring her in for an actual appointment - in fact, they told us it was a pediatric issue and we needed to be seen by her pediatrician. (Which we did and even after pediatrics could find no sign of what was causing the strike, the GI office STILL did not recommend a visit to them.) Clare was initially referred for a GI consult about 18 months ago due to poor weight gain, failure to thrive, and feeding issues - so how is a prolonged eating strike not their problem? Sounds like it falls perfectly in the GI category to me. We never once spoke to the GI during the six-week eating strike (not for lack of trying on our end). We were treated callously by the nursing staff and had to fight tooth and nail to have blood work done that the GI had ordered in the first place (we just wanted it done earlier than he had intended). I was ready to consider that water under the bridge, though, since Clare's pediatrician had diagnosed reflux and Clare's eating improved dramatically.
At her follow-up, the GI glossed over the eating strike. Didn't even really seem concerned about it. We informed him Clare was now on an appetite stimulant and Prevacid. Then he tells us he doesn't think Clare even has reflux. What??!!?? He had absolutely no evidence to back this up, just something he thought. And he kept saying that reflux was just heartburn. Maybe it is, I don't know. But I have had wicked pregnancy heartburn these last few months and it is killer. If Clare does have "just heartburn," the poor thing! No wonder she was done with eating. So he instructed us to cut her Prevacid dose in half with the goal of weaning her completely off it. His reasoning was that Prevacid interferes with calcium absorption and could cause bone necrosis, so she shouldn't be on it. Now this really irked me because he obviously has no idea about the calcium issues children with WS can have. I would venture a guess that at least half of all children with WS suffer from hypercalcemia (too much calcium in their system) and are on low- or no-calcium diets. Clare has always been on the borderline of hypercalcemia, so we have never had to watch her calcium intake. I sincerely doubt that her antacid interfering with some of her calcium absorption is going to be a problem, since individuals with WS (for some reason) absorb calcium too well. Then when I got home and asked around on my WS e-mail list about Prevacid, I was pointed in the direction of articles describing a small study done in England on patients over 50 who were on Prevacid who suffered hip fractures. Clare totally fits right into that category! Furthermore, doctors disagree whether Prevacid was even the cause of increasing the risk of hip fractures in older individuals. And, if it is the cause, the solution may simply be to consume more calcium. (Thanks a million, Amy, for all your help! I am now armed and ready!)
Shawn and I were very displeased that the one treatment plan the GI wants to institute is to take Clare off her Prevacid. The one change in Clare's environment that ended her six-week eating strike. We had seen her pediatrician the week before, and he had said don't touch a thing since Clare's eating had improved. (And she weighed 18 lbs, 15 oz at the GI's office, so her weight gain is chugging along!) Shawn and I hashed it out over and over, and we both feel it is time to move on. The only medication the GI has prescribed for Clare is her Miralax for her bowel movements. And I had to ask for that medication! After watching Clare scream in pain one too many times to pass a bowel movement, I called the GI and demanded a prescription. I even knew the name of the drug because my friend Michelle's son has similar issues. We also just found out that Miralax is now sold over-the-counter, so we don't even need the prescription anymore. I know Clare has GI issues - her severe constipation and reflux are the two big medical issues we are dealing with right now, since her heart is currently stable. However, we have a handle on the constipation, can purchase the medication ourselves, and our pediatrician has been handling the reflux stuff. So why do we need a GI involved anymore? The only thing he has ever done is give us samples of Pediasure to try and recipes to fortify Clare's food. And that has been helpful, but our pediatrician (or pretty much anyone) can do the same thing. I don't mean to knock the GI over and over, but Shawn and I refuse to mess around with the one thing we feel is helping Clare eat (her Prevacid). And if we don't value the doctor's advice, why are we wasting time and money bringing Clare to see him? She has her two-year visit with the pediatrician next week, so we're going to run everything by him. If the pediatrician feels Clare does need a GI involved in her care, then we're going shopping. (Ironically, the other GI in our clinic is the wife of our current GI, so that wouldn't work too well!) We'll head down to Boston, if we have to.
On a personal level, Clare's GI is a super nice guy. Very friendly, warm, and great with the kids. I am not saying he is incompetent medically, but we have not been happy with Clare's care lately. We are very unhappy with how the GI office as a whole handled Clare's eating strike. No one ever suggested we bring her in for an actual appointment - in fact, they told us it was a pediatric issue and we needed to be seen by her pediatrician. (Which we did and even after pediatrics could find no sign of what was causing the strike, the GI office STILL did not recommend a visit to them.) Clare was initially referred for a GI consult about 18 months ago due to poor weight gain, failure to thrive, and feeding issues - so how is a prolonged eating strike not their problem? Sounds like it falls perfectly in the GI category to me. We never once spoke to the GI during the six-week eating strike (not for lack of trying on our end). We were treated callously by the nursing staff and had to fight tooth and nail to have blood work done that the GI had ordered in the first place (we just wanted it done earlier than he had intended). I was ready to consider that water under the bridge, though, since Clare's pediatrician had diagnosed reflux and Clare's eating improved dramatically.
At her follow-up, the GI glossed over the eating strike. Didn't even really seem concerned about it. We informed him Clare was now on an appetite stimulant and Prevacid. Then he tells us he doesn't think Clare even has reflux. What??!!?? He had absolutely no evidence to back this up, just something he thought. And he kept saying that reflux was just heartburn. Maybe it is, I don't know. But I have had wicked pregnancy heartburn these last few months and it is killer. If Clare does have "just heartburn," the poor thing! No wonder she was done with eating. So he instructed us to cut her Prevacid dose in half with the goal of weaning her completely off it. His reasoning was that Prevacid interferes with calcium absorption and could cause bone necrosis, so she shouldn't be on it. Now this really irked me because he obviously has no idea about the calcium issues children with WS can have. I would venture a guess that at least half of all children with WS suffer from hypercalcemia (too much calcium in their system) and are on low- or no-calcium diets. Clare has always been on the borderline of hypercalcemia, so we have never had to watch her calcium intake. I sincerely doubt that her antacid interfering with some of her calcium absorption is going to be a problem, since individuals with WS (for some reason) absorb calcium too well. Then when I got home and asked around on my WS e-mail list about Prevacid, I was pointed in the direction of articles describing a small study done in England on patients over 50 who were on Prevacid who suffered hip fractures. Clare totally fits right into that category! Furthermore, doctors disagree whether Prevacid was even the cause of increasing the risk of hip fractures in older individuals. And, if it is the cause, the solution may simply be to consume more calcium. (Thanks a million, Amy, for all your help! I am now armed and ready!)
Shawn and I were very displeased that the one treatment plan the GI wants to institute is to take Clare off her Prevacid. The one change in Clare's environment that ended her six-week eating strike. We had seen her pediatrician the week before, and he had said don't touch a thing since Clare's eating had improved. (And she weighed 18 lbs, 15 oz at the GI's office, so her weight gain is chugging along!) Shawn and I hashed it out over and over, and we both feel it is time to move on. The only medication the GI has prescribed for Clare is her Miralax for her bowel movements. And I had to ask for that medication! After watching Clare scream in pain one too many times to pass a bowel movement, I called the GI and demanded a prescription. I even knew the name of the drug because my friend Michelle's son has similar issues. We also just found out that Miralax is now sold over-the-counter, so we don't even need the prescription anymore. I know Clare has GI issues - her severe constipation and reflux are the two big medical issues we are dealing with right now, since her heart is currently stable. However, we have a handle on the constipation, can purchase the medication ourselves, and our pediatrician has been handling the reflux stuff. So why do we need a GI involved anymore? The only thing he has ever done is give us samples of Pediasure to try and recipes to fortify Clare's food. And that has been helpful, but our pediatrician (or pretty much anyone) can do the same thing. I don't mean to knock the GI over and over, but Shawn and I refuse to mess around with the one thing we feel is helping Clare eat (her Prevacid). And if we don't value the doctor's advice, why are we wasting time and money bringing Clare to see him? She has her two-year visit with the pediatrician next week, so we're going to run everything by him. If the pediatrician feels Clare does need a GI involved in her care, then we're going shopping. (Ironically, the other GI in our clinic is the wife of our current GI, so that wouldn't work too well!) We'll head down to Boston, if we have to.
Wednesday, March 21, 2007
As Promised
Here are our most recent professional photographs. We had a series taken of both Jamie and Clare that shows their many expressions, but these two were our absolute favorites. They capture both their personalities perfectly. I had originally wanted to do some pregnancy photos with the kids, but this was the only one I halfway liked. Unfortunately, I just look chunky in it, not pregnant (since you cannot see the big belly)! But Jamie and Clare look beautiful, and Clare hugging Jamie was completely spontaneous and not posed.
Monday, March 19, 2007
Just Hanging Around
Really not much new going on here. Shawn is way up north in Maine tonight, so I am parenting solo. I told him no more overnights once April hits since it is getting harder and harder to keep up with Jamie and Clare all day, evening, and bedtime, then do it all over again the next day. Thankfully, I am blessed with a terrific husband, and he tries to keep the overnights few and far between. However, he has recently taken on some additional responsibilities with his job (after surviving lay-offs at his company - the call deciding his fate came in while we were in Disney. Thank goodness he was a survivor or that would have been a real bummer in the middle of Animal Kingdom!), so overnights are inevitable. I try to just keep on smiling!
Clare's OT and I have begun discussing the transition process of her end with Early Intervention and beginning with developmental preschool. (That's Clare and her OT, Jess, in the photo.) I still cannot believe Clare is going to be two years old in less than two weeks. There are many things that need to be done over the next year so the transition goes smoothly once Clare turns three. Many meetings, evaluations, that kind of thing. Figuring out the right setting for Clare in preschool, determining what types of services she will need to receive (such as OT, PT, speech), and how she will get to school. Right now, we are facing the decision that we may have to put Clare on the school bus. When I first signed on to the WS e-mail list, I remember reading posts from parents whose 3-year olds rode the bus to preschool. I was shocked and said to Shawn, "How can they even think of sending their 3-year old on the bus? I would never send my typical 3-year old, never mind my 3-year with developmental delays." Aahhhh... I may be eating my words. It's a logistical dilemma depending on what time school starts for Clare and how much Shawn can help out with transportation, since Jamie is going to a private preschool and I will have to drop him off. There is no bus option with Jamie. But I have since learned that riding a school bus to developmental preschool is vastly different from riding the big old yellow bus to school (something which I never had to do growing up since we always lived in walking distance of school). There are aides and helpers and all kinds of people to watch out for my Clare on the bus. It still is daunting to me, though.
Clare continues to expand her vocabulary. Her new favorite word is "money" and she knows exactly what it means (at least she knows what dollars and coins look like) and where it is. Like in my wallet, the piggy bank, Jamie's metal Batman container, and our Lenten rice bowl that sits on the kitchen table. Whenever she sees a receptacle that she knows contains money, all I hear is, "Money? Money? Money?" until she is allowed to open and play with the money. She is very good about not putting the money in her mouth, so I let her indulge. Developing her fine motor skills, after all! As for her gross motor skills, we're still working on those. Yesterday, she wanted something across the room and was trying desperately to get up on all fours. She couldn't manage supporting her weight on her arms by herself, though, so I held her by the waist and she crawled across the room. When I let go of her waist, she plopped belly down on the floor as if her arms could not hold her up. (Something to ask her OT and PT about this week, as well as the orthopedic surgeon next month.) But she definitely knew how to crawl with a little support. When I attended the WSA luncheon last weekend, I met another mother whose four year was walking at 14 months old, but he still did not say any words. It continues to amaze me how WS can manifest itself differently in each child. There is absolutely no predicting what challenges Clare may be faced with.
Jumping from subject to subject here, but I am definitely ready for winter to be over. Even though it was a pathetic winter snow-wise, it was still super cold at times. And very, very dry. We lost Clare's curls this winter due to the dry air and my pregnant skin feels it, too. (It was cute when we were in Disney because Clare's hair instantly became ringlets of curls again!) We've been dealing with cracked lips, sore noses, chapped cheeks, you name it. Last week, we had a brief, lovely taste of spring. It was warm enough that we could shed our heavy coats, gloves, and hats. All the snow melted. We took Jamie and Clare on puddle walks along our street. (Clare testing out the new wagon and loving it!) I even was able to bring them to the playground one afternoon. It was a little soggy from all the melting snow, but Jamie was in his glory for over an hour and even Clare enjoyed the fresh air. Sadly, over the weekend, we got buried under more snow and ice (and, even sadder, Shawn's snowblower broke before the big storm and he could not get it fixed in time), so we're back in winter again. Only three weeks until Easter, so we are hoping the snow melts again and our yard dries up in time for our annual Easter egg hunt. Otherwise, I feel bad for that poor Easter Bunny hiding all those eggs in our snow drifts.
Clare's OT and I have begun discussing the transition process of her end with Early Intervention and beginning with developmental preschool. (That's Clare and her OT, Jess, in the photo.) I still cannot believe Clare is going to be two years old in less than two weeks. There are many things that need to be done over the next year so the transition goes smoothly once Clare turns three. Many meetings, evaluations, that kind of thing. Figuring out the right setting for Clare in preschool, determining what types of services she will need to receive (such as OT, PT, speech), and how she will get to school. Right now, we are facing the decision that we may have to put Clare on the school bus. When I first signed on to the WS e-mail list, I remember reading posts from parents whose 3-year olds rode the bus to preschool. I was shocked and said to Shawn, "How can they even think of sending their 3-year old on the bus? I would never send my typical 3-year old, never mind my 3-year with developmental delays." Aahhhh... I may be eating my words. It's a logistical dilemma depending on what time school starts for Clare and how much Shawn can help out with transportation, since Jamie is going to a private preschool and I will have to drop him off. There is no bus option with Jamie. But I have since learned that riding a school bus to developmental preschool is vastly different from riding the big old yellow bus to school (something which I never had to do growing up since we always lived in walking distance of school). There are aides and helpers and all kinds of people to watch out for my Clare on the bus. It still is daunting to me, though.
Clare continues to expand her vocabulary. Her new favorite word is "money" and she knows exactly what it means (at least she knows what dollars and coins look like) and where it is. Like in my wallet, the piggy bank, Jamie's metal Batman container, and our Lenten rice bowl that sits on the kitchen table. Whenever she sees a receptacle that she knows contains money, all I hear is, "Money? Money? Money?" until she is allowed to open and play with the money. She is very good about not putting the money in her mouth, so I let her indulge. Developing her fine motor skills, after all! As for her gross motor skills, we're still working on those. Yesterday, she wanted something across the room and was trying desperately to get up on all fours. She couldn't manage supporting her weight on her arms by herself, though, so I held her by the waist and she crawled across the room. When I let go of her waist, she plopped belly down on the floor as if her arms could not hold her up. (Something to ask her OT and PT about this week, as well as the orthopedic surgeon next month.) But she definitely knew how to crawl with a little support. When I attended the WSA luncheon last weekend, I met another mother whose four year was walking at 14 months old, but he still did not say any words. It continues to amaze me how WS can manifest itself differently in each child. There is absolutely no predicting what challenges Clare may be faced with.
Jumping from subject to subject here, but I am definitely ready for winter to be over. Even though it was a pathetic winter snow-wise, it was still super cold at times. And very, very dry. We lost Clare's curls this winter due to the dry air and my pregnant skin feels it, too. (It was cute when we were in Disney because Clare's hair instantly became ringlets of curls again!) We've been dealing with cracked lips, sore noses, chapped cheeks, you name it. Last week, we had a brief, lovely taste of spring. It was warm enough that we could shed our heavy coats, gloves, and hats. All the snow melted. We took Jamie and Clare on puddle walks along our street. (Clare testing out the new wagon and loving it!) I even was able to bring them to the playground one afternoon. It was a little soggy from all the melting snow, but Jamie was in his glory for over an hour and even Clare enjoyed the fresh air. Sadly, over the weekend, we got buried under more snow and ice (and, even sadder, Shawn's snowblower broke before the big storm and he could not get it fixed in time), so we're back in winter again. Only three weeks until Easter, so we are hoping the snow melts again and our yard dries up in time for our annual Easter egg hunt. Otherwise, I feel bad for that poor Easter Bunny hiding all those eggs in our snow drifts.
Tuesday, March 13, 2007
Monday, March 12, 2007
Celebrating Another Anniversary
We are celebrating another anniversary over here. It has been more than a year since Clare has had a heart procedure. After Clare's last cath in March 2006, her cardiologist said we were most likely good to go for 6-12 months. This is the first time Clare has gone longer than expected. Usually she's back in the cath lab much sooner than the doctors predict.
I have a good friend whose four-month old daughter underwent her first cath today (with flying colors, I just heard!). We have been sending prayers and good vibes down to Boston all day. As I talked over stuff with my friend prior to the cath, it brought back the slew of memories and emotions of when Clare had her first cath when she was around the same age. I still have a hard time believing Clare was that small when she underwent her first cath - she still seems so small and fragile now, I can't even remember how tiny she must have been over a year and a half ago. Although I would never wish this on any parent, it has been nice to have someone close who understands what we've been going through with Clare. When Clare was first diagnosed, we were put in touch with a woman who had three sons with Clare's type of heart defect (we met this woman through a friend and then discovered coincidentally that the children also shared the same cardiologist). It was a great help to have someone to ask questions of prior to Clare's cath, but at the same time, I barely knew this other mother, so it was also awkward. I am so glad to be able to share my experience and knowledge with another mother and maybe make someone else's experience a tad bit easier. I know nothing can completely take away the stress, fear, and worry, but it can be a comfort to know there's a friend you can talk to who has been there. And somehow survived!
Clare's next sedated echo is scheduled for May 18, so we know she won't be having a cath before then. I have a sneaking suspicion that our time is up, however, so we'll see what happens in May. Of course, I am due on May 4, have a history of being post-due in my pregnancies, and this is the only date our cardiology office can do echos under general anesthesia in the surgical center, which is what Clare needs. It will be very interesting to see what happens come May.
I have a good friend whose four-month old daughter underwent her first cath today (with flying colors, I just heard!). We have been sending prayers and good vibes down to Boston all day. As I talked over stuff with my friend prior to the cath, it brought back the slew of memories and emotions of when Clare had her first cath when she was around the same age. I still have a hard time believing Clare was that small when she underwent her first cath - she still seems so small and fragile now, I can't even remember how tiny she must have been over a year and a half ago. Although I would never wish this on any parent, it has been nice to have someone close who understands what we've been going through with Clare. When Clare was first diagnosed, we were put in touch with a woman who had three sons with Clare's type of heart defect (we met this woman through a friend and then discovered coincidentally that the children also shared the same cardiologist). It was a great help to have someone to ask questions of prior to Clare's cath, but at the same time, I barely knew this other mother, so it was also awkward. I am so glad to be able to share my experience and knowledge with another mother and maybe make someone else's experience a tad bit easier. I know nothing can completely take away the stress, fear, and worry, but it can be a comfort to know there's a friend you can talk to who has been there. And somehow survived!
Clare's next sedated echo is scheduled for May 18, so we know she won't be having a cath before then. I have a sneaking suspicion that our time is up, however, so we'll see what happens in May. Of course, I am due on May 4, have a history of being post-due in my pregnancies, and this is the only date our cardiology office can do echos under general anesthesia in the surgical center, which is what Clare needs. It will be very interesting to see what happens come May.
Fetal Echo #2
I had my second fetal echo today at 32 weeks. The absolutely incredible awesome news is that there is NOTHING WRONG with the baby's heart. Everything looked perfectly normal - structure, function, output, thickening, etc. - it all looked great. The cardiologist wants me to bring Simon in the first month after he is born just so she can take a peek at him in person, but she says his heart looks great right now and she would expect to see something by now if there was going to be a problem.
The bad news is.... I think he's going to be a whopper of a baby. I asked the echo tech if she could estimate the size at all. She couldn't do an actual weight, but she did measure his head and he is measuring at 34 weeks. And I am only 32 weeks along! The average baby-in-utero gains about 1/2-1 pound per week, so if he's already 1-2 pounds ahead of the game.... Eeek......
The bad news is.... I think he's going to be a whopper of a baby. I asked the echo tech if she could estimate the size at all. She couldn't do an actual weight, but she did measure his head and he is measuring at 34 weeks. And I am only 32 weeks along! The average baby-in-utero gains about 1/2-1 pound per week, so if he's already 1-2 pounds ahead of the game.... Eeek......
Sunday, March 11, 2007
WSA Mother's Luncheon
I went to a mother's luncheon today hosted by the New England chair of the Williams Syndrome Association. There have been other events in New England, but most have been too far away for us to trek out with two little ones for a day trip. This event was only about 15 minutes away, so it was something I definitely wanted to attend. Plus, like I said, I finally got to meet Kerry! It's so great to actually meet in person someone you have chatted with for months over e-mail.
The luncheon was fabulous. I was a little nervous going because it can be awkward getting together with other ladies that you do not know and the only thing you know you have in common is that you all have a child with a rare syndrome. What are you going to talk about? Duh.... Williams syndrome obviously. But it was more than that. We got to share stories, ideas, tips, but it wasn't a whine session or anything negative. Some parts felt like an episode of "Medical Mysteries" hearing all the different challenges our kids are faced with. You get so wrapped up in your own little world that it was nice to break free of that and see that you are not alone and there are many others walking down the same road. Since everyone was somewhat local, I also got some good advice on area resources and things to research - such as music therapy and hippotherapy (working with horses). There is a music camp in Massachusetts just for children with WS, so I am excited to attend an open house there in the near future.
And Kerry was awesome! (You were, you were!) Her son Brady is 17 months old, so he's not too much younger than Clare. We discovered she only lives about an hour away, so now we have no excuse not to get Brady and Clare together at some point. And, because I am pregnant, I have to comment that the food was delicious, and I ate three servings of lunch and two of dessert. Totally taking advantage of the pregnancy status! We'll see what the scale says when I go in for my OB appointment this week!
The luncheon was fabulous. I was a little nervous going because it can be awkward getting together with other ladies that you do not know and the only thing you know you have in common is that you all have a child with a rare syndrome. What are you going to talk about? Duh.... Williams syndrome obviously. But it was more than that. We got to share stories, ideas, tips, but it wasn't a whine session or anything negative. Some parts felt like an episode of "Medical Mysteries" hearing all the different challenges our kids are faced with. You get so wrapped up in your own little world that it was nice to break free of that and see that you are not alone and there are many others walking down the same road. Since everyone was somewhat local, I also got some good advice on area resources and things to research - such as music therapy and hippotherapy (working with horses). There is a music camp in Massachusetts just for children with WS, so I am excited to attend an open house there in the near future.
And Kerry was awesome! (You were, you were!) Her son Brady is 17 months old, so he's not too much younger than Clare. We discovered she only lives about an hour away, so now we have no excuse not to get Brady and Clare together at some point. And, because I am pregnant, I have to comment that the food was delicious, and I ate three servings of lunch and two of dessert. Totally taking advantage of the pregnancy status! We'll see what the scale says when I go in for my OB appointment this week!
Friday, March 09, 2007
News Report
We're settling back in after our vacation (which means doing load upon load of laundry and putting away the thousand new toys we came home with). Jamie is spending the weekend with my family in RI, so Shawn is taking this opportunity to finish painting the living room (yea!) and I am going to seriously go through the toys and throw, throw, throw away. (Or at least put away, put some in our yard sale pile, that kind of thing.) Clare is going to enjoy being the center of attention for the weekend!
To update on our lives, Clare had her last RSV-antibody shots this week. Hip hip hooray! She is done with them forever. After receiving two shots a month for the past five months and doing this last winter as well, both Clare and I are glad to have that over and done with. I must say, I don't know if it's the shots, but she has been remarkably healthy these past two winters. For such a peanut, she has only ever had one real bad cold last winter which turned into croup. And Jamie can get cold after cold, but it does not pass on to Clare. That's one strong immune system! Clare also had her follow-up with the pediatrician for reflux. The medication is working beautifully, so we are not going to change anything. Her weight was actually down a couple ounces (after all those Krispy Kremes, I was shocked she wasn't tipping the scales), so I don't think she's going to hit 20 pounds by her second birthday (or even 19 pounds for that matter), which was my personal goal for her. Her pediatrician printed out her weight history for me. All in all, she is still gaining, which is the important thing. I was looking over this record and I couldn't believe how many doctor's appointments she has had since she was born. 59 appointments. And this is just to the clinic where five of her doctors are - that does not even count her ear doctor, eye doctor, audiologist, therapy sessions (let's not even go there!), blood work, x-rays, echos, or our trips to Children's Hospital in Boston. Going to the doctor's is such a part of our lives now that it is routine. I never really think twice about it anymore. Now that I personally am going every two weeks (and soon every week), it doesn't even phase me. Which I guess all things considered is a good thing. Going to the doctor's used to be a huge deal and take up a good portion of the day. Now we just go with the flow, get in and out as fast as we can, and leave it at that. So we are learning some stuff!
We went to our fabulous photographer to have the kids' pictures done this morning. It has been a year since we updated our professional portraits, so I was praying all would go well. Jeff, the photographer, is an amazing artist, but he has had one goal since Clare was born - to get her to really smile for a photo. It has not happened yet. Well, he achieved his goal! We did some photos of Jamie and Clare individually and then together. Jamie was a total camera ham. He would ask Jeff how he should be posed and even posed himself and Clare for their first photo together. Too funny! Clare took a little more coaxing, but we let her sit on a trunk (which was the prop for her picture) and eat her snack first. When she was done, she was all smiles for the camera. The photos are beautiful, as always, and I cannot wait to share them when we get our prints back.
This weekend I am attending a mother's luncheon for the New England Region of the Williams Syndrome Association. I am looking forward to having this time with other moms of children with WS. Plus I get to finally meet one of my other WS blogging mommies, Kerry. She only lives an hour and a half away, but that can be so far when you're busy busy with your family!
P.S. Thank you to all who have contributed to the WSA Valentine Fund in Clare's honor. We are so blessed with the continued generosity of family and friends (and strangers!) to aid in the research being done into Williams syndrome and providing a better future for children such as Clare. If you are interested in donating on Clare's behalf, you can visit this link: http://www.williams-syndrome.org/valentines/ClareRouillard.html
To update on our lives, Clare had her last RSV-antibody shots this week. Hip hip hooray! She is done with them forever. After receiving two shots a month for the past five months and doing this last winter as well, both Clare and I are glad to have that over and done with. I must say, I don't know if it's the shots, but she has been remarkably healthy these past two winters. For such a peanut, she has only ever had one real bad cold last winter which turned into croup. And Jamie can get cold after cold, but it does not pass on to Clare. That's one strong immune system! Clare also had her follow-up with the pediatrician for reflux. The medication is working beautifully, so we are not going to change anything. Her weight was actually down a couple ounces (after all those Krispy Kremes, I was shocked she wasn't tipping the scales), so I don't think she's going to hit 20 pounds by her second birthday (or even 19 pounds for that matter), which was my personal goal for her. Her pediatrician printed out her weight history for me. All in all, she is still gaining, which is the important thing. I was looking over this record and I couldn't believe how many doctor's appointments she has had since she was born. 59 appointments. And this is just to the clinic where five of her doctors are - that does not even count her ear doctor, eye doctor, audiologist, therapy sessions (let's not even go there!), blood work, x-rays, echos, or our trips to Children's Hospital in Boston. Going to the doctor's is such a part of our lives now that it is routine. I never really think twice about it anymore. Now that I personally am going every two weeks (and soon every week), it doesn't even phase me. Which I guess all things considered is a good thing. Going to the doctor's used to be a huge deal and take up a good portion of the day. Now we just go with the flow, get in and out as fast as we can, and leave it at that. So we are learning some stuff!
We went to our fabulous photographer to have the kids' pictures done this morning. It has been a year since we updated our professional portraits, so I was praying all would go well. Jeff, the photographer, is an amazing artist, but he has had one goal since Clare was born - to get her to really smile for a photo. It has not happened yet. Well, he achieved his goal! We did some photos of Jamie and Clare individually and then together. Jamie was a total camera ham. He would ask Jeff how he should be posed and even posed himself and Clare for their first photo together. Too funny! Clare took a little more coaxing, but we let her sit on a trunk (which was the prop for her picture) and eat her snack first. When she was done, she was all smiles for the camera. The photos are beautiful, as always, and I cannot wait to share them when we get our prints back.
This weekend I am attending a mother's luncheon for the New England Region of the Williams Syndrome Association. I am looking forward to having this time with other moms of children with WS. Plus I get to finally meet one of my other WS blogging mommies, Kerry. She only lives an hour and a half away, but that can be so far when you're busy busy with your family!
P.S. Thank you to all who have contributed to the WSA Valentine Fund in Clare's honor. We are so blessed with the continued generosity of family and friends (and strangers!) to aid in the research being done into Williams syndrome and providing a better future for children such as Clare. If you are interested in donating on Clare's behalf, you can visit this link: http://www.williams-syndrome.org/valentines/ClareRouillard.html
Thursday, March 08, 2007
Where All Your Dreams Come True
That's right, folks, we're talking about Disney World!
We just got back from our spur-of-the-moment vacation to Orlando. It's been planned for a few weeks on a whim Shawn and I had. Winters in NH can drag and drag, even when there's no snow. After a long winter and lots of stress over Clare eating/not eating and Shawn's job, it was time for a break!
Without boring everyone to death over every last detail of our trip, I can sum it up in two words - incredible and exhausting. We stayed right at the Animal Kingdom Lodge in the Walt Disney World Resort. It's an amazing place. Our balcony overlooked the savannah and we saw giraffes, zebras, ostriches (to name a few) every day right outside our window. And not behind a fence or glass - they were right there. Jamie loved looking for the animals with his "noculars." The Lodge is African motif and was stunning with amazing African restaurants. The one downside - apparently Jamie is allergic to guava! He loved the jungle juice they served at the Lodge, but had a nasty case of hives from it. Luckily the Benadryl has finally kicked in!
We spent our time between Magic Kingdom and Animal Kingdom (and the hotel, where Jamie discovered the thrill of water slides). It was truly a magical vacation. Shawn had never been to Disney, and I went once as a child to Epcot, so we loved it. The weather was perfect (so wonderful to be in 80 degrees, but quite a shock to come home to 3 degree weather.) It was tiring, though, because both Jamie and Clare preferred to be carried a good majority of the time. But it was worth it to see the expressions on Jamie and Clare's faces (not to mention Shawn's!). We weren't sure how Clare would do on the rides at Magic Kingdom, but she loved them (that great vestibular stimulation!) as long as they weren't too dark or noisy. She liked the flying rides best - like Dumbo and Aladdin's Flying Carpet. Jamie's favorite was the race cars. Shawn and I loved the shows at Animal Kingdom - the Lion King and new Nemo show.
We had reservations for character dining. You never know how that's going to go over. The first day, neither Jamie nor Clare got too close to any of the characters, but by the time we had dinner with Tigger and Pooh, they both loved it. We bought Jamie an autograph book (after he saw the other kids with them) and he was diligent about having every character he met sign his book. He also needed to receive and give a hug and kiss to everyone. After she warmed up to them, Clare, too, wanted to hug and touch all the characters. She was fascinated by them! We also had dinner with Goofy and Minnie (among others) and breakfast with Donald. The only people we really didn't see were all the princesses, but that's okay because we're not a princess family (yet!).
I can't describe adequately what an amazing trip this was. Although it was physically hard on us (especially me at 32 weeks pregnant), I am glad we have the memories. Clare discovered Krispy Kreme donuts (she ate at least two every morning for breakfast - not the healthiest diet, but good for fat!). She would start hollering if the second Krispy Kreme wasn't put in front of her fast enough and ate it in fistfuls of donut. Jamie couldn't wait to see what was around every corner. He was always on the lookout for a character or another ride. It was incredible to be able to experience the magic of Disney with our children. We hope to be able to do it again in the future.
We just got back from our spur-of-the-moment vacation to Orlando. It's been planned for a few weeks on a whim Shawn and I had. Winters in NH can drag and drag, even when there's no snow. After a long winter and lots of stress over Clare eating/not eating and Shawn's job, it was time for a break!
Without boring everyone to death over every last detail of our trip, I can sum it up in two words - incredible and exhausting. We stayed right at the Animal Kingdom Lodge in the Walt Disney World Resort. It's an amazing place. Our balcony overlooked the savannah and we saw giraffes, zebras, ostriches (to name a few) every day right outside our window. And not behind a fence or glass - they were right there. Jamie loved looking for the animals with his "noculars." The Lodge is African motif and was stunning with amazing African restaurants. The one downside - apparently Jamie is allergic to guava! He loved the jungle juice they served at the Lodge, but had a nasty case of hives from it. Luckily the Benadryl has finally kicked in!
We spent our time between Magic Kingdom and Animal Kingdom (and the hotel, where Jamie discovered the thrill of water slides). It was truly a magical vacation. Shawn had never been to Disney, and I went once as a child to Epcot, so we loved it. The weather was perfect (so wonderful to be in 80 degrees, but quite a shock to come home to 3 degree weather.) It was tiring, though, because both Jamie and Clare preferred to be carried a good majority of the time. But it was worth it to see the expressions on Jamie and Clare's faces (not to mention Shawn's!). We weren't sure how Clare would do on the rides at Magic Kingdom, but she loved them (that great vestibular stimulation!) as long as they weren't too dark or noisy. She liked the flying rides best - like Dumbo and Aladdin's Flying Carpet. Jamie's favorite was the race cars. Shawn and I loved the shows at Animal Kingdom - the Lion King and new Nemo show.
We had reservations for character dining. You never know how that's going to go over. The first day, neither Jamie nor Clare got too close to any of the characters, but by the time we had dinner with Tigger and Pooh, they both loved it. We bought Jamie an autograph book (after he saw the other kids with them) and he was diligent about having every character he met sign his book. He also needed to receive and give a hug and kiss to everyone. After she warmed up to them, Clare, too, wanted to hug and touch all the characters. She was fascinated by them! We also had dinner with Goofy and Minnie (among others) and breakfast with Donald. The only people we really didn't see were all the princesses, but that's okay because we're not a princess family (yet!).
I can't describe adequately what an amazing trip this was. Although it was physically hard on us (especially me at 32 weeks pregnant), I am glad we have the memories. Clare discovered Krispy Kreme donuts (she ate at least two every morning for breakfast - not the healthiest diet, but good for fat!). She would start hollering if the second Krispy Kreme wasn't put in front of her fast enough and ate it in fistfuls of donut. Jamie couldn't wait to see what was around every corner. He was always on the lookout for a character or another ride. It was incredible to be able to experience the magic of Disney with our children. We hope to be able to do it again in the future.
Thursday, March 01, 2007
Nostalgia
I’ve been thinking a lot about Clare’s birth lately. Partly because her 2nd birthday is coming up next month and also because we have another birth around the corner. I wish I could remember the time before we knew there was something wrong, but I can’t. I try so hard to conjure up those feelings I must have felt in my pregnancy with Clare – hopes and dreams and expectations of what having a little girl would be like, of what watching Jamie with a sibling would be like, of being a perfect little family of four. Even now, being pregnant again, some of that blissful ignorance of pregnancy is gone. Because now I know these things CAN happen to us, that we CAN be the people who are the statistic, that 1 in 10,000. Don’t get me wrong, there is still much joy and anticipation and wonderful hopes and dreams with this pregnancy, but everything is colored a little differently now. I am so excited for the birth of our baby boy and for Jamie and Clare to have a little brother. Jamie cannot wait to have a brother (since we have a bunch of friends who are also having babies right now, hopefully he will not be shocked when Baby Simon comes out and pretty much does nothing but sleep, cry, and eat). Yet, at the same time, I feel guilty when I look forward to having another baby, to experience a typical babyhood again. I feel as if I am saying Clare’s babyhood was not enjoyable - but hey, it was rough! So I find myself remembering Clare’s birth often – those last hours and moments before the world was painted a different shade for us.
Clare’s pregnancy was pretty easy. Other than the normal pregnancy aches and discomforts, I had no medical issues. Nine days after my due date had come and gone, I agreed to be induced. I was not keen on the idea of Pitocin (the drug used to stimulate contractions), so my doctor tried other more natural methods first. When none of that worked, I was given Pitocin. You never forget any of your children’s births, but Clare’s is still in the forefront of my mind. Her delivery into this world was so different from Jamie’s. My labor with Jamie was a grand total of 24 hours (almost to the minute). It was long and slow. I had an epidural and all the women in our family hung out in the delivery room all day with us (the men were there, too, but they were vanquished to the waiting room towards the end). It was one grand party. When the evening snack cart came by, everyone loaded up with chips and soda, and then settled back in to watch the end of the show. After almost three hours of pushing, Jamie was born. Everything seemed very drawn out. Labor was physically exhausting, but not all that painful (once the epidural kicked in). I was joking and laughing up until the end.
Clare was a whole different ball game. Pitocin kicks your labor right into high gear with no build-up. From the beginning, contractions were strong and painful. I had an epidural during Clare’s labor as well, but it made no difference. Progress was still somewhat slow, however. My dad had to catch a plane two hours away that night so he was frequently asking my doctor when she thought the baby would be born. He didn’t want to miss the birth, but he also didn’t want to be driving at midnight, if it was going to take all night. At 8:35pm, I was still only at 7cm. My OB stated that we were looking at an April Fool’s baby at this point, so my dad decided to leave. Clare had other plans, though (a pattern we saw from the beginning!). She must have figured enough was enough. Who cares that Mommy isn’t fully dilated? Who cares that Grand Dad just left the hospital? Who cares that the OB wasn’t back in the room yet? Who cares that the nurses kept saying “don’t push”? She was coming! At 8:52pm (only 17 minutes later), Clare was born. In many ways, I feel as if that is part of who Clare is. Nothing happens until she’s ready, but when she’s ready, watch out!
I am entering that phase of pregnancy where I am ready to do this all over again. I am big and uncomfortable (I think we’re headed for a nine-pounder). Two of my close friends have already given birth (and the third, with our newest godchild, is any minute now… we’re still waiting for the phone call!), and seeing those sweet new babies makes me long for my own. Labor is hard, but I am actually looking forward to it. (I think…)
Clare’s pregnancy was pretty easy. Other than the normal pregnancy aches and discomforts, I had no medical issues. Nine days after my due date had come and gone, I agreed to be induced. I was not keen on the idea of Pitocin (the drug used to stimulate contractions), so my doctor tried other more natural methods first. When none of that worked, I was given Pitocin. You never forget any of your children’s births, but Clare’s is still in the forefront of my mind. Her delivery into this world was so different from Jamie’s. My labor with Jamie was a grand total of 24 hours (almost to the minute). It was long and slow. I had an epidural and all the women in our family hung out in the delivery room all day with us (the men were there, too, but they were vanquished to the waiting room towards the end). It was one grand party. When the evening snack cart came by, everyone loaded up with chips and soda, and then settled back in to watch the end of the show. After almost three hours of pushing, Jamie was born. Everything seemed very drawn out. Labor was physically exhausting, but not all that painful (once the epidural kicked in). I was joking and laughing up until the end.
Clare was a whole different ball game. Pitocin kicks your labor right into high gear with no build-up. From the beginning, contractions were strong and painful. I had an epidural during Clare’s labor as well, but it made no difference. Progress was still somewhat slow, however. My dad had to catch a plane two hours away that night so he was frequently asking my doctor when she thought the baby would be born. He didn’t want to miss the birth, but he also didn’t want to be driving at midnight, if it was going to take all night. At 8:35pm, I was still only at 7cm. My OB stated that we were looking at an April Fool’s baby at this point, so my dad decided to leave. Clare had other plans, though (a pattern we saw from the beginning!). She must have figured enough was enough. Who cares that Mommy isn’t fully dilated? Who cares that Grand Dad just left the hospital? Who cares that the OB wasn’t back in the room yet? Who cares that the nurses kept saying “don’t push”? She was coming! At 8:52pm (only 17 minutes later), Clare was born. In many ways, I feel as if that is part of who Clare is. Nothing happens until she’s ready, but when she’s ready, watch out!
I am entering that phase of pregnancy where I am ready to do this all over again. I am big and uncomfortable (I think we’re headed for a nine-pounder). Two of my close friends have already given birth (and the third, with our newest godchild, is any minute now… we’re still waiting for the phone call!), and seeing those sweet new babies makes me long for my own. Labor is hard, but I am actually looking forward to it. (I think…)
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