There's nothing like returning home and discovering that Clare's echo is now only three days away instead of four weeks.
Due to the fact that Clare's cardiologist is unexpectedly going to be out of the office for December and January (and Clare had an echo scheduled for December 18), she did not want Clare to wait until February to echo her. While we were away, the office rescheduled Clare's echo to today. The suddenness of it made me nervous for some reason. Why didn't the doctor want to wait until February? After realizing that it had already been over two months since Clare's last cath, I started to feel those familiar butterflies flitting around in my stomach.
I am happy to say that the echo was fairly good news. (With Clare, there never is a truly good echo unfortunately.) Her narrowings are only slightly worse, her valve is still only slightly leaking, and her pressure gradients remain about the same (as far as the doctor could tell because she didn't actually get a good study on that particular number at this echo). All in all, Clare continues to be clinically stable and does not need another cath right now. Her blood pressures are creeping up, though. One of the benefits of being a defibrillator salesman is that Shawn has blood pressure machines in our house. So we take Clare's blood pressure often (which then naturally extends to taking Jamie's, since he begs and begs). Lately, her numbers have been high. Today, in the doctor's office, her top number was 130. And that's on blood pressure meds! Clare's cardiologist is still concerned that there may be some narrowing in her renal arteries, but she does not want to risk sedating Clare to obtain a MRI of those arteries. She increased Clare's dose of blood pressure medication (since Clare seems to be going through a growth spurt - we've hit 22 pounds!). We're going to take her blood pressure twice a week until we see the doctor again in early March. If her pressures do not decrease with the new dose, then Clare will have to undergo a MRI.
Wednesday, November 28, 2007
Monday, November 26, 2007
The Indicator
We are home from our road trip! Lots and lots of visiting family, hours in the car, and information loaded into ten days.
We spent a wonderful Thanksgiving with my grandparents in West Virginia. My older sister came down with us and my mom flew in as well, so we were surrounded by family. We were able to leave Jamie with my mom and sister at my grandparents while we took Clare to Louisville, Kentucky (and, of course, Simon) to meet Dr. Mervis. There is so much to tell, it would take an exceedingly long post and no one wants to read that. So I will try to keep it brief!
After two days of various tests and assessments, Dr. Mervis concluded that Clare is doing very well cognitively. Dr. Mervis stated that Clare's receptive language skills are "exceptional" - one of the best she has ever seen in a child with Williams syndrome of Clare's age. In fact, Clare tested "average" as compared to typical children her age. Her verbal skills are "very good" compared to children with Williams syndrome, and she tested "low average" as compared to typical children. All news we were thrilled to hear. I had prepared myself for a scolding that Clare was not receiving any formal speech therapy. On the contrary, Dr. Mervis was very impressed with Clare's language skills and told us to keep up whatever we are doing. She encouraged lots of labeling, reading stories, and continuing to build Clare's vocabulary.
Dr. Mervis' assistant noted that Clare is a "good indicator." At first, I had no idea what she meant then realized that it was because Clare points out objects, shows you stuff, knows what she wants. I liked The Indicator as Clare's superhero name. I wonder what her special power would be.
Dr. Mervis did note that Clare is delayed in her non-verbal reasoning skills and mastery motivation. She is easily frustrated, does not always like to finish a task to completion, and gives up easily. Dr. Mervis feels that much of Clare's temper tantrums are due to her lack of non-verbal reasoning skills. Instead of being able to make a choice in her head, Clare simply throws a fit. She recommended lots of positive attention and praise for just trying, even if not succeeding. Activities such as puzzles and matching games will help Clare build up those skills. Hopefully by helping Clare learn to make choices, consider options, not giving up, and express herself verbally, we can lessen her tantrums. We're already using the phrase "use your words, Clare" over and over (one of those annoying "parent phrases" you hear, but then find yourself uttering!). And Clare is responding. She now says "help, please" or "help, Mama" if she needs assistance instead of issuing a high-pitched noise of frustration.
Dr. Mervis was satisfied with the quantity of Clare's therapies right now. She recommended that once Clare is in school, she should have OT, PT, and speech in school with an additional hour of OT per week in an outpatient setting. I admit that I was partially dreading this trip to see Dr. Mervis because I was afraid of what she would have to say about Clare. To hear her say that Clare As she put it, "Clare will not get dumber." Intellectually, she is more than capable of holding a job, live independently of her parents, and maintain relationships. It's now up to us to encourage, support, and give Clare those self-help skills to live in this big, big world. And in the immediate future, goals such as preschool, potty-training, and transitioning out of her crib are in the forefront.
On the way home, we stopped at my younger sister's in New Jersey for a couple days. It was neat seeing her apartment with her new husband. (It's still slightly weird to think of my sister as grown-up and married, even though she is only two years younger than me.) The whole family was excited to finally arrive home late Sunday night. We were exhausted by the end of the trip, as I am sure my family was as well! Ten days with three little ones when you are not used to it (or are used to it!) is a whole new experience. But I am glad we made the trip, and we are very satisfied with the feedback we received from Dr. Mervis.
We spent a wonderful Thanksgiving with my grandparents in West Virginia. My older sister came down with us and my mom flew in as well, so we were surrounded by family. We were able to leave Jamie with my mom and sister at my grandparents while we took Clare to Louisville, Kentucky (and, of course, Simon) to meet Dr. Mervis. There is so much to tell, it would take an exceedingly long post and no one wants to read that. So I will try to keep it brief!
After two days of various tests and assessments, Dr. Mervis concluded that Clare is doing very well cognitively. Dr. Mervis stated that Clare's receptive language skills are "exceptional" - one of the best she has ever seen in a child with Williams syndrome of Clare's age. In fact, Clare tested "average" as compared to typical children her age. Her verbal skills are "very good" compared to children with Williams syndrome, and she tested "low average" as compared to typical children. All news we were thrilled to hear. I had prepared myself for a scolding that Clare was not receiving any formal speech therapy. On the contrary, Dr. Mervis was very impressed with Clare's language skills and told us to keep up whatever we are doing. She encouraged lots of labeling, reading stories, and continuing to build Clare's vocabulary.
Dr. Mervis' assistant noted that Clare is a "good indicator." At first, I had no idea what she meant then realized that it was because Clare points out objects, shows you stuff, knows what she wants. I liked The Indicator as Clare's superhero name. I wonder what her special power would be.
Dr. Mervis did note that Clare is delayed in her non-verbal reasoning skills and mastery motivation. She is easily frustrated, does not always like to finish a task to completion, and gives up easily. Dr. Mervis feels that much of Clare's temper tantrums are due to her lack of non-verbal reasoning skills. Instead of being able to make a choice in her head, Clare simply throws a fit. She recommended lots of positive attention and praise for just trying, even if not succeeding. Activities such as puzzles and matching games will help Clare build up those skills. Hopefully by helping Clare learn to make choices, consider options, not giving up, and express herself verbally, we can lessen her tantrums. We're already using the phrase "use your words, Clare" over and over (one of those annoying "parent phrases" you hear, but then find yourself uttering!). And Clare is responding. She now says "help, please" or "help, Mama" if she needs assistance instead of issuing a high-pitched noise of frustration.
Dr. Mervis was satisfied with the quantity of Clare's therapies right now. She recommended that once Clare is in school, she should have OT, PT, and speech in school with an additional hour of OT per week in an outpatient setting. I admit that I was partially dreading this trip to see Dr. Mervis because I was afraid of what she would have to say about Clare. To hear her say that Clare As she put it, "Clare will not get dumber." Intellectually, she is more than capable of holding a job, live independently of her parents, and maintain relationships. It's now up to us to encourage, support, and give Clare those self-help skills to live in this big, big world. And in the immediate future, goals such as preschool, potty-training, and transitioning out of her crib are in the forefront.
On the way home, we stopped at my younger sister's in New Jersey for a couple days. It was neat seeing her apartment with her new husband. (It's still slightly weird to think of my sister as grown-up and married, even though she is only two years younger than me.) The whole family was excited to finally arrive home late Sunday night. We were exhausted by the end of the trip, as I am sure my family was as well! Ten days with three little ones when you are not used to it (or are used to it!) is a whole new experience. But I am glad we made the trip, and we are very satisfied with the feedback we received from Dr. Mervis.
Monday, November 12, 2007
Sunday, November 11, 2007
Words
Today while doing some Christmas shopping at Toys 'R Us, Shawn pointed out this poster to me in the checkout line:
As the parent of a special needs child, I have grown a pretty thick skin when it comes to words. What's politically correct to say? What's the proper terminology? What's accepted language in this day and age? Can I use the word "retarded" to describe my child? Can others? Personally, I would not use the word "retarded" to describe Clare. We have no measurement of her IQ. I don't know if she actually falls in the lines of retardation. But she is delayed. She is slow to learn. She is not doing many things that are age-appropriate. So I would not be surprised if someone else used the word "retarded." (In a professional capacity, of course!) After dealing with Clare's heart issues, hearing that she is retarded is definitely not the worst of what we've heard. I will take that any day over hearing some of the stuff we have heard regarding Clare's heart.
Yet I can understand how "retarded" has become politically incorrect to say. People use the word as slang now. It is used as an insult. But I feel we are now bending over backwards to find the right words to say. I am not allowed to refer to my son as "normal" because it implies my daughter is not. I AM allowed to say that Jamie is "typical," but then what do I call Clare? Atypical? And I have to make sure I am clear that Jamie is only typical of his peer group. And Clare is typical of hers. Am I permitted to use the words "special needs" anymore? How about "cognitively delayed?" Shawn and I personally thought that "genetically-challenged" sounded appropriate. Better than "differently-abled." Are you kidding me??? Part of it makes me laugh because it sounds so ridiculous. But another part of me wonders why we can't just say it like it is.
I know Clare is not normal in many ways. She is not typical of other children her age. I do not need a poster using the words "differently-abled" to make myself feel better about my child. You can refer to one of my children as "normal" and the other one as "special." It does not hurt me or offend me to hear those words used concerning Clare. They're just words. And it's the truth! Clare does have special needs. Yet I do love it when someone tells me Clare is acting like a normal kid. Whether it's because she is throwing a temper tantrum, throwing her food, refusing to take a nap or whether it's because she is chatty to all she meets, loves to play with baby dolls, and likes having her fingernails painted. When I question one of her doctors or grill a fellow mom about what other children Clare's age are doing, I am happy to hear that Clare is exhibiting "normal" behavior. That's the stuff that reminds me to treat Clare like a normal kid. To not use her "abnormality" as a get-out-of-jail-free pass. To not let her get away with things because she is not a typical 31-month old. To not just say, "Oh, she has Williams syndrome," and, therefore, excuse her behavior. I am not doing Clare any favors by making excuses for her. She may be "differently-abled," but that does not mean she is unable. Or is that helpless, incompetent, inadequate, unfitted.... oh, who knows anyway?
As the parent of a special needs child, I have grown a pretty thick skin when it comes to words. What's politically correct to say? What's the proper terminology? What's accepted language in this day and age? Can I use the word "retarded" to describe my child? Can others? Personally, I would not use the word "retarded" to describe Clare. We have no measurement of her IQ. I don't know if she actually falls in the lines of retardation. But she is delayed. She is slow to learn. She is not doing many things that are age-appropriate. So I would not be surprised if someone else used the word "retarded." (In a professional capacity, of course!) After dealing with Clare's heart issues, hearing that she is retarded is definitely not the worst of what we've heard. I will take that any day over hearing some of the stuff we have heard regarding Clare's heart.Yet I can understand how "retarded" has become politically incorrect to say. People use the word as slang now. It is used as an insult. But I feel we are now bending over backwards to find the right words to say. I am not allowed to refer to my son as "normal" because it implies my daughter is not. I AM allowed to say that Jamie is "typical," but then what do I call Clare? Atypical? And I have to make sure I am clear that Jamie is only typical of his peer group. And Clare is typical of hers. Am I permitted to use the words "special needs" anymore? How about "cognitively delayed?" Shawn and I personally thought that "genetically-challenged" sounded appropriate. Better than "differently-abled." Are you kidding me??? Part of it makes me laugh because it sounds so ridiculous. But another part of me wonders why we can't just say it like it is.
I know Clare is not normal in many ways. She is not typical of other children her age. I do not need a poster using the words "differently-abled" to make myself feel better about my child. You can refer to one of my children as "normal" and the other one as "special." It does not hurt me or offend me to hear those words used concerning Clare. They're just words. And it's the truth! Clare does have special needs. Yet I do love it when someone tells me Clare is acting like a normal kid. Whether it's because she is throwing a temper tantrum, throwing her food, refusing to take a nap or whether it's because she is chatty to all she meets, loves to play with baby dolls, and likes having her fingernails painted. When I question one of her doctors or grill a fellow mom about what other children Clare's age are doing, I am happy to hear that Clare is exhibiting "normal" behavior. That's the stuff that reminds me to treat Clare like a normal kid. To not use her "abnormality" as a get-out-of-jail-free pass. To not let her get away with things because she is not a typical 31-month old. To not just say, "Oh, she has Williams syndrome," and, therefore, excuse her behavior. I am not doing Clare any favors by making excuses for her. She may be "differently-abled," but that does not mean she is unable. Or is that helpless, incompetent, inadequate, unfitted.... oh, who knows anyway?
Friday, November 09, 2007
Bored
After 2+ years, I changed the background color of the blog because I was bored. The soft, pale orange is much more soothing to my eyes than pink. I was never a pink girl anyway.
And, speaking of being bored, Clare learned how to crawl. Now that walking is so last week, she decided to try something new. It is cute to watch her crawl. I have never seen a child crawl so slow, so deliberately, so determined to actually crawl. Not crawling to get somewhere, but crawling because she can.
And, speaking of being bored, Clare learned how to crawl. Now that walking is so last week, she decided to try something new. It is cute to watch her crawl. I have never seen a child crawl so slow, so deliberately, so determined to actually crawl. Not crawling to get somewhere, but crawling because she can.
Thursday, November 08, 2007
Smart Boy
There are some days when I am exhausted by the end of the day (just some days??). Then there are other days when I am exhausted from the very beginning. One day recently, Simon was up for quite a chunk of time in the middle of the night (tooth #2 is cutting). After finally getting him back to sleep around 4am and drifting off myself, I was startled awake when my bedroom door opened at 5am. Shawn being out-of-town, I dimly registered that Jamie had announced he was "all done with sleeping" and ready "to watch a movie." I mumbled something that must have sounded like agreement because I found myself snoozing to the dinosaur sounds of Little Foot and Cera as the pillows next to me were rearranged again and again. It was not until later in the day when I was cleaning up my room that it came back to me that Jamie had also asked for something to eat during his movie. Again, I must have said something about helping himself in the pantry closet downstairs and opened his choice of food for him (since he cannot open most wrappers himself). It was only later, as I was sweeping crumbs off the bed and collecting wrappers, that I realized that Halloween candy and Nutter Butters were the breakfast of champions that morning.
Thursday, November 01, 2007
Time to Catch Up
I know my last few posts have been pretty devoid of any information on how life is going. It's busy! With ferrying Jamie to and from school three times a week, a huge chunk of our time at home has gone away. Less time to do laundry, dishes, household cleaning, general clutter-clearing. Which means I am scrambling to fit these things in throughout the day (often losing a good portion of my "Tree" time), which equals less blogging. So there's my excuse!
Jamie is thriving at school. We recently had our first Parent-Teacher Conference (and I had butterflies in my stomach about it even though I did not get to go, just Shawn). You want to hear the teacher say how much they e
njoy having your child in the class, what a well-behaved child he is, what a smart child he is. Thankfully, Jamie's teacher said all three about him! She was surprised to discover that this was Jamie's first year of school and said he was very academic. As a former geek myself, I loved hearing all this. Even though Jamie attending his private preschool is a sacrifice in some ways for us, everything we put into it is more than worth it when we see how excited he is to go to school each day, how he has already grown by leaps and bounds in two short months, how Jamie and school are a perfect fit. Outside school, Jamie continues his weekly swim classes. What a fish that boy is! He loves the water and is a better swimmer than I am! As you can see by the recent photos, superheroes are still the #1 obsession in our house, and our house is a much safer place since Batman lives here.
njoy having your child in the class, what a well-behaved child he is, what a smart child he is. Thankfully, Jamie's teacher said all three about him! She was surprised to discover that this was Jamie's first year of school and said he was very academic. As a former geek myself, I loved hearing all this. Even though Jamie attending his private preschool is a sacrifice in some ways for us, everything we put into it is more than worth it when we see how excited he is to go to school each day, how he has already grown by leaps and bounds in two short months, how Jamie and school are a perfect fit. Outside school, Jamie continues his weekly swim classes. What a fish that boy is! He loves the water and is a better swimmer than I am! As you can see by the recent photos, superheroes are still the #1 obsession in our house, and our house is a much safer place since Batman lives here.Clare also enjoys her swim classes. She has finally started to "get it" in swim class. She will kick when I instruct her to and loves to "jump" into the water. We are working 
on climbing out of the pool. She has not been able to do it on her own yet (as she has not figured out how to climb anything yet - stairs, furniture, etc.), but she loves to repeat the instructions: "elbow, elbow, knee, knee." I hear her reciting them throughout the class. Her language has really taken off. She is not always understandable, but we catch bits and pieces of phrases. She has started to string words together as well. Her first two sentences were (typical of Miss Clare): "Emmies in a bowl?" (her word for M&M's, the all-time favorite food around here - we hear this question about twenty times a day) and "I have boo-boo" (whenever she gets a band-aid, which is quite often). Clare will mimic anything and her new catch phrase is, "Eight, nine, blast-off" (from the Little Einsteins TV show - a popular one with Jamie and Clare). She wants to do everything Jamie does these days and has discovered the fun of stickers and markers (as the photo illustrates). We are gearing up for our big road trip in less than two weeks down to Kentucky and West Virginia. Clare will see Dr. Mervis, the WS expert, for two days, and then we're spending time with my grandparents and family. I am looking forward to the trip to receive some input and insight into the world of Clare, but I am also nervous about what the doctor will have to say (not to mention the 14-hour-plus car ride each way with three kids - thankfully my sister is coming with us!).
on climbing out of the pool. She has not been able to do it on her own yet (as she has not figured out how to climb anything yet - stairs, furniture, etc.), but she loves to repeat the instructions: "elbow, elbow, knee, knee." I hear her reciting them throughout the class. Her language has really taken off. She is not always understandable, but we catch bits and pieces of phrases. She has started to string words together as well. Her first two sentences were (typical of Miss Clare): "Emmies in a bowl?" (her word for M&M's, the all-time favorite food around here - we hear this question about twenty times a day) and "I have boo-boo" (whenever she gets a band-aid, which is quite often). Clare will mimic anything and her new catch phrase is, "Eight, nine, blast-off" (from the Little Einsteins TV show - a popular one with Jamie and Clare). She wants to do everything Jamie does these days and has discovered the fun of stickers and markers (as the photo illustrates). We are gearing up for our big road trip in less than two weeks down to Kentucky and West Virginia. Clare will see Dr. Mervis, the WS expert, for two days, and then we're spending time with my grandparents and family. I am looking forward to the trip to receive some input and insight into the world of Clare, but I am also nervous about what the doctor will have to say (not to mention the 14-hour-plus car ride each way with three kids - thankfully my sister is coming with us!).Simon turned six months old today. I cannot believe he is already six months old! Where has that time gone? He is such a happy, easygoing baby. Everyone comments on what a happy baby we have. Even now, when he is cutting
his first tooth, he is still all smiles. With a lot of drool and chewing on his fist, but still all smiles. Simon is definitely our easiest baby so far. (I keep saying he has to be, being #3!) We are all enjoying how precious it is to have a baby in the house again. I love that Simon's needs are so simple because (1) it makes life easier for me (always thinking selfishly!) and (2) it reminds me to stop and enjoy each and every moment because Simon's first year is flying by. My little man loves all the attention his brother and sister give him, loves to be sung to (which can be tricky because Clare usually loathes to be sung to), and has recently entered the world of solid foods. So far, he is not sure what all the fuss is about.
his first tooth, he is still all smiles. With a lot of drool and chewing on his fist, but still all smiles. Simon is definitely our easiest baby so far. (I keep saying he has to be, being #3!) We are all enjoying how precious it is to have a baby in the house again. I love that Simon's needs are so simple because (1) it makes life easier for me (always thinking selfishly!) and (2) it reminds me to stop and enjoy each and every moment because Simon's first year is flying by. My little man loves all the attention his brother and sister give him, loves to be sung to (which can be tricky because Clare usually loathes to be sung to), and has recently entered the world of solid foods. So far, he is not sure what all the fuss is about.Throughout the busyness of life, Shawn and I are enjoying this time with three little ones in the house. It is often loud and crazy, but also full of love and laughter. (And it took me only four days to complete this post!)
Picture Post
Happy All Saints Day!
And while we're at it, Happy (Belated) Halloween!
Trick-or-treating on her own... a dream come true...
And while we're at it, Happy (Belated) Halloween!
Trick-or-treating on her own... a dream come true...
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