Monday, December 31, 2007

Friday, December 28, 2007

Christmas Season

The plethora of photos and videos are to make up for my lack of actual words written lately. But we are finally digging ourselves out from under the pile of Christmas presents, cookies, and decorations, so here we go!

Christmas seemed to come so fast this year. Shawn and I made a pact to sit back, relax, and enjoy the holiday season. I try to get the majority of my shopping done before Thanksgiving, so I do not have to face the mall, traffic, or the hordes of people in December. I am proud to say that goal was accomplished at least. But there are still always the zillion last-minute runs to Target and the grocery store. And, after bemoaning the fact that Walgreens was actually advertising it would be open on Christmas Day (my words: "Isn't Christmas sacred anymore? Who needs to be at Walgreens on Christmas Day. The tin foil can wait."), I had to eat my words with a run to Walgreens on, yes, Christmas Day for the batteries and baby food that Santa forgot to bring.

This year, I had to remind myself over and over to SIMPLIFY. That was my Christmas theme. And we did. We cut back on the amount of gift exchanges we were involved in. We went to one less Christmas party. We decided not to put out all the Christmas decorations this year, but just a select few. Shawn and I even instituted a 2-gift rule for each other. I admit that at times I was still overwhelmed by everything that needed to get done before Christmas (or I felt needed to get done) and had a couple of Christmas panics. But, on the whole, I feel like we did very well in keeping the chaos to a minimum, the consumerism at bay, and the true meaning of Christmas in abundance. Several nights, we packed the kids in the car after dinner and drove around admiring Christmas lights. I baked more cookies this year than I ever have. And not by buying the mix at the store that you add water and an egg to, which I did last year in a feeble attempt to make some cookies. Everything was from scratch - lemon squares, M&M cookies, special Christmas brownies, sugar cookies, you name it. We faithfully lit the candles of our Advent wreath every night, reading Bible passages and singing songs as we prepared ourselves for the birth of Jesus. Jamie and Clare did extra good deeds throughout Advent, and we wrote them down nightly on little slips of paper to put them in a special Jesus stocking we hung on the tree. They then bought baby Jesus a birthday present (this year he received a stuffed pony), which was carefully wrapped. Both the stocking and present were left under the tree on Christmas Eve. This was the first year Jamie started singing Christmas carols and learned "Jingle Bells," "Silent Night," "The Twelve Days of Christmas," and "We Wish You A Merry Christmas" by heart. Instead of her normal "hi," Clare greeted everyone with "ho ho ho." Simon was the only child who was all smiles sitting on Santa's lap. Now we are counting down the twelve days of Christmas until January 6, the Epiphany of the Lord, the Feast of the Three Kings, when the wisemen came to pay homage to Jesus. (Which also happens to be Shawn's birthday!) That will be when our Christmas season truly ends.

I want my children to remember the traditions we have in our family surrounding Christmas. They may not remember that this was the year that Santa brought Jamie the ninja turtle van or Clare her baby doll stroller or Simon his train, but I hope they remember the joy, fun, laughter, and wonder we had getting ready for Christmas. I know I will.

Tuesday, December 25, 2007

We Wish You A Merry Christmas

Wishing you a happy, healthy, and holy Christmas this year!

Sunday, December 16, 2007

Christmas Cookies


It brought a smile to my face, so sharing some Christmas joy and music with you.

Saturday, December 15, 2007

Experiences in a Waiting Room

I had to bring Simon to the pediatrician’s yesterday for his flu shot booster. While I was there, I popped into Clare’s cardiology office to see if they would do a blood pressure check for me (the luxury of having Clare’s specialists right next door to the pediatrician). We have been monitoring Clare’s blood pressure at home, but Shawn’s machine is out on loan right now. It has been ten days since we have been able to check her blood pressure. The last time we checked, her top number was still 130, so I wanted to alleviate that concern. Thankfully, it was down to 109. The increased dose must have finally kicked in!

Upon exiting the doctor’s office, I was busy bundling the kids back up in their jackets, hats, mittens, in the waiting room. I had noticed two women sitting in the chairs – one in her 50's, the other probably around 30. Clare was walking around making friends with a little boy on the other side when the older of the two women suddenly asked me, “Does your daughter have Williams syndrome?” Shocked, I replied, “Yes, she does!” That is when the younger woman piped up, “I have Williams syndrome, too!” I took a closer look at this well-groomed, beautifully-coiffed (what a great word!), beaming woman. And sure enough, behind her glasses, I could see the puffy eyes. I saw the button nose. She had a wide smile with gorgeous teeth. She instantly started cooing over Clare and Simon. I had tons upon tons of questions flashing through my brain (Do you live with your mother? Are you here to see the cardiologist? Did you have your teeth done?) but clamped down on the urge to let them spill out, not wanting to be rude and nosy. Instead, we exchanged small talk as I continued to gear up Simon and Clare. The mother stated that she could tell instantly from the moment we walked into the waiting room that Clare had Williams syndrome. The daughter told me that Clare looked just like she did at that age, with the same curly hair. I did not get any answers to the burning questions in my mind, but, strangely enough, I did receive some peace in my heart. A little glimpse into what the future would be like – me bringing Clare to the cardiologist’s, even when she was 30 years old. And it wasn’t so bad.

On another note, Clare has made the transition out of the crib. One of our goals upon leaving Louisville was to transfer Clare into the toddler bed. When we arrived home, Shawn set up the bed in Jamie and Clare’s bedroom. Our plan was to leave both the bed and crib in there for about a month, and then slowly have Clare start transitioning into the bed. (This is how we transitioned Jamie out of the crib.) That night, however, Clare refused to go in the crib. “No, no, no,” she yelled. Shawn asked her where she wanted to sleep. She emphatically pointed to the toddler bed. And that was that – her crib days were over. Shawn snapped this photo a couple nights after Clare stopped sleeping in the crib. It is a bittersweet milestone to watch your once baby girl sleeping in her big girl bed. Or at least near it. (And, yes, the mess is Clare’s post-bedtime mess that she likes to make before falling asleep on the floor at night. And the big lump of pillows, blankets, and animals on the left is Jamie somewhere.)

Saturday, December 08, 2007


In searching my photos for a good one of Clare to submit to the Williams Syndrome Association for their annual Valentine Fund, I came across this one. My friend Jamie (who is an amazing photographer) captured it during apple picking in October. It is so gorgeous and my baby is so gorgeous, it just brought me so much joy. I wanted to share it.

Wednesday, December 05, 2007

I Heart Huckabee!

S~Living in NH at this time it is hard to not get involved in Politics...
Here is a picture of me asking Mike Huckabee about his Healthcare plan.

Saturday, December 01, 2007

Quest for a Perfect Christmas Photo

I love sending photo cards of the children at Christmas. So I am constantly on the look-out for a great photo. Being in WV this Thanksgiving, the kids were all dressed to match and my grandmother's house is beautiful. Perfect!

Almost passable except for the semi-smile from Clare, the fake smile from Jamie, and Simon slowly slipping away from his brother.

Take Two: Now the boys look happy, but what is with that face from Clare??

So photo-taking at my grandmother's house was a bust. No need to fear. While we were staying with my sister and her husband in New Jersey on the way home, we visited the spectacular Longwood Gardens. These gardens were incredible and there were a plethora of possible photo sites. Here we go...

I loved this Christmas tree display. However, I was not crazy about the fact that the kids were wearing their outerwear. Plus the whole standing idea did not work.

Let's try sitting down. Nope, Clare just wanted to stand. Jamie did a great job holding Simon, but Simon was too distracted by the flowers and lights.

We finally find a display that is not only gorgeous, but located right at a bench (no standing, no sitting on the floor). We are inside the warm conservatory of gardens and the kids actually match (and not on purpose).
By this time, we have been touring the gardens for close to three hours. The kids are exhausted and are on Day Nine of our road trip. Jamie was definitely done with the day, Clare is trying to catch shadows, and Simon, I am not sure what's going on in his little head.
After promises that this is the absolutely last photo stop, cajoling for smiles, and lots of aunties saying "Jamie," "Clare," "Simon," we finally get smiles from all three. Too bad Clare has Simon in a choke hold.
And then poking his eyes. And now I am done and calling it a night. The quest continues...

Wednesday, November 28, 2007

Surprise.... It's An Echo!

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.

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.

Monday, November 12, 2007

Sunday, November 11, 2007


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?

Friday, November 09, 2007


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.

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 enjoy 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!).

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.

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...

Sunday, October 28, 2007

Batman's Dream

Batman's dream - or more accurately, a little boy's dream - to meet the real Superman and Batman. (As Jamie put it: "Mom, I KNOW that was the real Superman and Batman. They were so big with huge muscles.")

Friday, October 26, 2007

A Little About Me

I usually never do these because I think they are corny and time-consuming, but my mom recently sent me one. I read her entries and was surprised by how much I did not know about my mom. I was fascinated to hear about her likes and dislikes. Although I have been keeping this blog for two years now, I don't often talk about myself. Sure I express my thoughts and feelings, but I wanted to give you a glimpse into me as a person! So here goes:

1. What time did you get up this morning? 6:19 a.m.
2. Diamonds or pearls? Neither.. not a jewelry person
3. What was the last film you saw at the cinema? Harry Potter 5: Order of the Phoenix
4. What is your favorite TV show? Heroes, The Office
5. What do you usually have for breakfast? whatever I can eat quickly and one-handed
6. What kind of soap do you use? The Body Shop nut-scented
7. What is your middle name? Teresa
8. What food do you dislike? Corn, peas
9. What is your favorite food? Chicken anything
10. What kind of car do you drive? Saturn Relay
11. Favorite sandwich? Turkey club
12. What characteristic do you despise? Being fake or contrived
13. Favorite item of clothing? Jeans
14. If you could go anywhere in the world on vacation, where would you go? Ireland or Disney World
15. What color is your bathroom? downstairs is green and white, upstairs is brown and blue
16. Favorite brand of clothing? Lands End
17. Where would you retire to? a huge house on the ocean in New England
18. What was your most recent memorable birthday? 30 (because I turned 30 not because anything terribly exciting happened)
19. When is your birthday? February 27
20. What is your favorite scent? Moonlight Path by Bath and Body Works
21. Are you a morning person or a night person? both
22. What is your shoe size? 9.5
23. Pets? cats Midnight and Jack Sparrow
24. Any new and exciting news you'd like to share with us? Simon cut his first tooth!
25. What did you want to be when you were little? doctor (or more accurately, a forensic pathologist)
26. How are you today? tired
27. What is your favorite candy? any and all candy
28. What is your favorite flower? tulips
29. What is a day on the calendar you are looking forward to? October 28 is trick-or-treat day here!
30. What church do you attend? Ste. Marie's
31. What are you listening to right now? peace and quiet (finally!)
32. What was the last thing you ate? oreo cookie shake from Burger King
33. Do you wish on stars? no
34. If you were a Crayola crayon, what color would you be? sage green
35. How is the weather right now? blustery and cool, just like an autumn night should be
36. Last person you spoke to on the phone? my husband earlier today
37. What is your favorite soft drink? Cherry Coke
38. Favorite restaurant? any type of Mexican
39. Hair Color? Blonde
40. Siblings? 2 sisters
41. Favorite day of the year? Christmas
42. What was your favorite toy as a child? Glamor Gals cruise ship
43. Summer or winter? winter
44. Hugs or kisses? Both from my children and husband - not so much any from anyone else
45. Chocolate or Vanilla? Chocolate
46. When was the last time you cried? Last Friday after Clare's transition meeting
47. What is under your bed? my wedding dress!!
48. What friend have you had the longest? Denis and Nichole M. are my longest friends that I still keep in contact with! (Did that surprise you??)
49. What did you do last night? scrapbooked at my friend's house
50. Favorite room in your house? my bedroom
51. What are you afraid of? my children being hurt
52. Popcorn salted? buttered? Absolutely both
53. Favorite sport to watch? on TV, none - in real life, baseball or hockey
54. Favorite sport or activity to participate in? ummmmm... playing with my children?

Wednesday, October 24, 2007

Always A Riot

The one thing I can always count on from my children (and my husband who is usually involved in these things), is that they can always make me smile. Even on the worst days, even through tears, even when I am grumpy, tired, sad, stressed, or all of the above, they make me smile. And laugh and giggle and remember why I love being their mommy!

****Okay, I had to add this because there were many queries about exactly what Simon is supposed to be. (There were NO questions about what Jamie was????) Simon is an airline pilot - I know it's hard to see the cap and headset in the photo.

Saturday, October 20, 2007

More School Moments

Now that we have Jamie settled in preschool and he is thriving, it is time to think about what to do for him and kindergarten. Unbelievable that we already have to think about this two months into the preschool year. We have many dilemmas facing us, especially with Clare going to school as well. Time issues, half days versus full days, private versus public, bus options, conflicting drop-off and pick-up schedules. So we have a lot on our plate to figure out right now.

Clare's transition process into preschool has officially started. We had our first meeting with the special education team for the school district last week. Clare's case manager with Early Intervention came with us to the meeting to meet the new people in our life who are helping to decide Clare's next phase of the journey. I was happy that the woman who runs the show in the school district transition process was not as grumpy, mean, or evil as we had heard. She was pleasant to us, took us on a tour of the preschool classrooms, and answered numerous questions. Those questions she could not answer, she pointed us in the right direction to find those answers.

Shawn and I were both admittedly surprised by what we saw. The preschool classrooms seemed very crowded (not with kids, but with stuff everywhere) and I was going into sensory overload myself. The teachers we briefly met were happy and smiling and cheery (as you expect preschool teachers to be), but all the children seemed so big and old to me. Clare was a very tiny little girl next to them! These children were running, climbing easily in and out of small chairs, doing glittery art projects, even having gym class! Clare cannot sit in a regular chair because she cannot climb onto one herself and has no concept of her space in the chair. She does not understand that there is an edge and that she will go right over the side. She does not run, climb, or do art projects. I was so overwhelmed that I could feel my eyes filling with tears as I held Clare in my arms. Clare was overwhelmed, too, and was content to perch on my hip staring solemnly at this new environment. Both the director and teachers assured us that the majority of children are eager to get into the classroom the first day and that the parents have a harder time than the child. I can certainly believe that about Jamie's peer group, but I am not so sure about Clare.

I keep reminding myself that Clare will be six months older when she actually starts preschool. I look back to where Clare was six months ago (not walking independently, not transitioning in and out of sitting) and am amazed at how far she has come. Yet she is still so young to me. We understand her for the most part, but will she be able to communicate her needs to others? How will she keep up with her classmates? I don't want Clare sitting on the sidelines. I thought it was hard walking Jamie into school for the first time. Now I know that it will be almost impossible to let go of Clare.

Thursday, October 18, 2007

Van Gogh in the Making

Last night, we had the joy of attending our first Parents' Night at Jamie's preschool. It was amazing in many ways. (Not the least of which was that all three of our children stayed home with a babysitter for three hours - an incredible babysitter who put them all to bed, including Simon with a bottle. A big moment for us!)

After weeks of hearing bits and pieces of Jamie's life in school, we finally received more of a glimpse into that world. (Four years old and we already have these conversations: "What did you do in school today?" Reply: "Nothing" or "I don't remember.") We were able to see his math folder and writing journal. The journal has open-ended statements in which Jamie draws a picture to compete the statement. Jamie then explains his drawing to the teacher who writes the rest of the sentence on his drawing. We always knew our boy had quite the imagination, but were a little taken aback by some of his endings. All and all, it was a great, informative night, and reaffirmed our satisfaction with Jamie's preschool. He loves every moment of school and soaks it all up. And school photos have finally gotten cuter!

You Can't Win

What's awesome: After two and a half years of trying, denials, re-written applications, and personally collecting pages upon pages of medical records, Clare has finally been approved for State health insurance that will cover 100% of her medical costs. And they backdated that three months.

What's not: We also found out that they do not reimburse bills, co-pays, deductibles, etc. that we have already paid out-of-pocket. So all those expenses from Clare's two caths (which neatly fell into the three month backdate), numerous co-pays for doctor's visits, so on and so forth, because we are diligent bill-payers and have kept up with our medical costs, we are out of luck.

Sunday, September 30, 2007

Clara Luce Clarior

"Clare is the brightest light."

Clara Luce Clarior is a Latin phrase that is etched on a stained glass window in the Franciscan chapel of the residence of a dear family friend (who is a Franciscan priest). Before Clare has a procedure, we often get a phone message from this friend reminding us that "Clara luce clarior." Clare is the brightest light. And she is indeed in our lives.

(We also have two other equally bright lights in our life who give us so much joy!)

Wednesday, September 26, 2007

Dare to Hope

(Sorry for taking so long to post, but here it is!)

We had some good news today at the cardiologist as well as conflicting stories. When Clare's doctor told me that the Boston doctor did not expect to see Clare back in the cath lab for 2-3 years, I was floored. Utterly speechless. I stammered, "Are you sure?" She smiled at my disbelief and read me his letter. Clare's other Boston doctor, however, feels it is more accurate that Clare will be back in 6-12 months. I am guarded in my optimism of Clare's actual timetable, but I am daring to hope that it is the longer stretch.

After another exhausting cath procedure and two long post-cath weeks, I was prepared to hear that Clare was going back in December. After enduring four caths in her first 11 months of life, she had a 15-month reprieve. After her cath in June, though, when we heard they wanted Clare back in three months, I feared we were back on the road of caths every three months. That there is the very real possibility that Clare is good to go until at least 2008 fills me with hope again. Shawn and I have been very worried over the state of Clare's heart lately. I have no false view of reality that Clare is better. I know her heart is not "fixed." I know that by the doctor saying 2-3 years, he is saying that he has done all he can for now and he expects his "repairs" to hold for that long. But I also know that every time Clare goes under anesthesia and the doctors run their catheters through her heart, her risk of "problems" increase dramatically. Anesthesia is so risky for Clare, that her doctors would not even put her under unless the risk of NOT doing something to relieve the build-up of pressure in her heart is much greater.

So my glimmer of hope is there. Clare does not return to the cardiologist for another echo for three months. In six months, she will have a lung scan performed to check how her output looks. Clare's cardiologist does not want Clare to have the renal MRI right now because she would have to be under anesthesia. We are going to continue to monitor her blood pressure at home to be sure it continues to stay steady. At least then we know that, even if her renal arteries are narrowed, they are not getting worse.

A Block for Clare

I received an e-mail today that Clare's block for the Congenital Heart Defect Awareness Quilt Project was created.

I had submitted an application for the block months ago, but had forgotten about it. After a long day at the cardiologist's today (more on that later when I am not so brain dead), it was a pleasant reminder to receive the e-mail with a photo of the finished block. Once Clare's block is put into a quilt, they are going to send me a photo of the quilt as well.

The CHD Quilt Project is a very special project to bring awareness to the world about congenital heart defects. Each quilt is specially made of 42 different blocks. Each block is personally made for an individual born with a congenital heart defect. The application asks to tell something about the child the block is for. I wrote that Clare's nickname was "Clare Bear," she loved ducks and her cats, plus looked adorable in the colors yellow and blue. Thus her block was created! Included is her birth date and diagnoses as well.

Thanks to Noel who passed along the link on her blog many months ago! If you are interested in learning more about the quilts, go to CHD Quilt Project.

Saturday, September 22, 2007

The Perfect Man

You awaken me at 5 am simply because you cannot stand another moment without me.

You smile and laugh at everything I say to you, no matter how dumb or silly it is.

When I leave the room, you cry and cry until I come back to you.

You think every meal I make you is the most delicious you have ever had.

I am your favorite person in the world.

You are content to sit with me no matter what we do - read books, fold laundry, watch "Survivor."

You are my grocery store companion late at night.

You love me just the way I am. And I love you, my perfect little man!

Wednesday, September 19, 2007

Finally - Some Good News

Clare's cardiologist thought the site looked better. There is still a pool of blood under the wound, but the doctor listened to it (which I thought was interesting!), checked Clare out, and pronounced that Clare was now really on the mend. The only two things that were slightly concerning were that Clare's feet were blue when we went in (which hopefully was just due to the cold air this morning - it was an early morning appointment) and her blood pressure was very low (about 30 points below Clare's normal). We don't have to go back to the doctor until next week. (A week between appointments - WOW!)

The cardiologist also finally determined that we are officially taking Clare off the Plavix, her blood thinner. We have been waiting for almost two years to hear this news. As long as her cath site looks good next week, we will start her on aspirin therapy. Hopefully our "battered" child will stop looking like that soon!

Tuesday, September 18, 2007

Not Quite There

Clare's spirits are much better the last two days, but she is not healed yet. One of her cath sites is pooling blood under the incision, so her cardiologist is monitoring her closely. We were there yesterday afternoon so the doctor could have a peek and will be going back in tomorrow morning because the lump has grown slightly larger. I am praying that we are not sent back to Boston to address this problem. I know the cardiologist is worried that the wound is not healing properly and infection might be setting in.

We still have not heard when Clare's next cath is expected to be. Clare has her full battery of post-cath tests (EKG, chest x-ray, echocardiogram) next week, so the cardiologist should have the recommendation by then. We did talk about the fact that Clare's renal arteries were not looked at during this past cath. The cardiologist was not happy to hear this. I got the feeling she does not want to wait until Clare's next cath to have this done. So Clare may undergo a sedated MRI in the near future to look at those arteries. Unfortunately, this would mean another trip down to Children's Hospital because her cardiologist does not feel comfortable having Clare do it locally without the proper back-up, "just in case."

Here's to better news tomorrow!

Monday, September 17, 2007

On the Mend

No more fevers, no more vomiting, no more funny heart rhythms - Clare is on the mend! The pediatrician yesterday said she was not dehydrated and ran a couple EKGs which were faxed down to Boston. The docs there said the EKGs were at baseline for Clare, so all was good.

Today, Clare is ten times more improved than yesterday, but she is still very tired. She ate some dinner last night and started walking again this morning , so we know she is feeling better. Her cath site in her groin is still bleeding, though, so we want her to take it easy for the next few days, so that clots properly. We're getting back to normal.

Photos: 1-Morning of her cath, Clare is fascinated by the big fish tank in the lobby of Children's Hospital.
2-After swallowing her "happy drink," Clare chills out in her cool get-up.
3-Post-cath, Clare snuggled with Elmo until she fell asleep.
4-Wearing more cool shades from the hospital, Clare is waiting to be discharged.

Sunday, September 16, 2007

The Full Dish

We came home yesterday. Here's the scoop from our hospital stay. After hours of waiting, the cardiologist who assisted in Clare's cath finally made it to our room. (Clare's primary interventional cardiologist NEVER updates us - brilliant man, poor people skills?) And, of course, it was during the ten minutes that Shawn was eight floors below grabbing dinner. The cardiologist apologized that no one spoke with us sooner, but she was scrubbed in on another case and thought that one of the other doctors would have talked to us. Unfortunately not.

There is good news and "not so good news." The good news is that four of Clare's proximal left pulmonary vessels were successfully dilated. Three of Clare's proximal right pulmonary vessels were successfully dilated. Clare's echo four weeks ago measured right-sided pressures that were 200% those of her left side (a normal heart should only be 25%). The cath showed that the right pressures were actually only 100% of the left pressures. Not stellar news, but pressures that are equal is MUCH better than pressures that are double. Post-cath, the pressures measured 70%. It's a lot of numbers and very technical heart lingo to explain it all, but that's basically the gist of it. Clare's entire aorta looked fabulous.

The "not so good news" is that the right pulmonary side (which was what they worked on in the June cath) was much more narrowed than expected, given that her cath was only 3 1/2 months ago. Therefore, the doctors had to spend time re-dilating those vessels and did not have time to work on any of Clare's distal pulmonary vessels on either side. Also, they were unable to have a look at Clare's renal arteries since she was already maxed out on the amount of dye her body can tolerate once they were done with the dilations. So Clare is returning to the cath lab in the near future. We do not know exactly when (we will find out when we see her NH cardiologist in a couple weeks), but the Boston cardiologist predicted 3-9 months from now.

Clare went into the cath with low blood pressure and dehydration, so she did have some "blips" in there. (Such a nice, innocuous term for something that, in reality, is more serious.) I kind of feel responsible for the dehydration bit, given that we were instructed to have Clare drink 2-4 ounces of water two hours prior to her cath to prevent that very thing. So I diligently woke Clare up at 4:45am and had her snuggle in bed with me to drink some water. However, Clare was very sleepy, did not want to drink water, and was more interested in falling back asleep on me. I was able to get her to take a couple sips, but once 5:00am hit, I had to cut her off from any more water, as that is when her NPO started (no more food or drink). I do understand (as does any parent) that I cannot force Clare to drink. I just wish I had been more successful in doing so. Regardless, this dehydration and low blood pressure resulted in Clare receiving dopamine and a blood transfusion. She did have some funny rhythms in the cath (again, I love the word "funny" that the doctors use at the hospital to describe something much more serious), most likely due to the fact that they are snaking all sorts of tiny objects through her blood vessels!

All this added up to a somewhat successful cath. Clare's fever finally broke around 2am the night after her cath. Shawn said it was a miserable night for everyone. Clare had some funny rhythms again overnight. This time, most likely due to the high fever. She did have some vomiting post-cath as well, but seemed a little more like herself on Saturday with her heart doing what it is supposed to be doing, so she was discharged.

Shawn and Clare are at the pediatrician's right now because Clare is still vomiting, not eating, and barely drinking. There is worry of dehydration, especially because Clare needs to stay hydrated so her body can filter out the dye (or it can harm her kidneys). After more throwing up this morning and no eating or drinking, we called the hospital. Rather than driving down to Boston to wait in their emergency room, we chose to see the pediatrician here. If Clare is dehydrated, they can send her over to the local ER for IV fluids. Children's Hospital also wants the pediatrician to run a couple EKG's to make sure Clare's heart is not acting up again. So I am waiting to hear back from Shawn (or see them walk in the door) on what's going on.

Friday, September 14, 2007

A Brief Update

Just a quick update since I know people are anxious to hear how Clare's cath went, but we are exhausted. I promise to write more once we are settled again.

The doctors did a lot of work in her pulmonary arteries, but thankfully no stents were placed. So Clare is now on the cardiac floor, not the ICU. There were the expected and unexpected bumps during her cath, but it is over, and that's the positive thing. Right now, Clare is very uncomfortable. She has a high fever and cannot keep anything down (not even water), so Clare and Shawn are in for a rough night (Simon and I just arrived home and will head back to the hospital in the morning). Both are not a surprise given the amount of anesthesia and dye Clare received during the cath. The cardiologist resident said that if the fever is gone by the morning and Clare can keep some breakfast in, then she will be able to come home tomorrow.

Thank you again for all the prayers. Please keep them up. Although the cath had some positive aspects to it, Clare still has a long road ahead of her.

P.S. Thank you, thank you, thank you to Kerry and Brady (and Kerry's mom) for stopping in BOTH DAYS and hanging with us for a little while. I know after a long day at the doctor's and fighting Boston traffic, you just want to go home. It was wonderful to see your smiling faces (and Brady's grumpy, tired face at times!). We're glad Mr. Brady had such a great cardiology appointment!

Our Peanut is Doing Well

Clare is in her cath now and so far so good. She was first case today, which meant a super-early morning for everyone, but also meant that Clare did not have to wait long sans food before being taken in.

Yesterday was a busy pre-op day with all the usual running around and multiple tests. All this hospital stuff has forced our children to be fairly easy-going and portable, so both Clare and Simon were good little troopers. (Jamie was at home basking in his hours upon hours of alone time with Auntie Erin - children's museum, slushies, blueberry bubblegum, and a rare treat of a can of Sprite - I wish I got to stay home with Auntie Erin!) The doctors were all very positive about Clare's cath and the outcome of it, which lifted our spirits somewhat. We ended up staying in Boston overnight, so we did not have to endure another hell of a three-hour car ride into the city (a ride which should only, based on miles, take 45 minutes - traffic is another story).

We arrived at the hospital this morning at 6:15am. (Yawn.) Clare was in her glory. I am continually impressed with how well she does sometimes. After a long day, late bed, early morning, and no food, I was a BEAR. (Shawn and I never eat on Clare's cath mornings since she cannot eat - how cruel is that to be chomping down on an egg sandwich while your daughter is starving.) But Clare was having a great time. The hospital lobby was fairly empty, so she walked around everywhere. Our parents arrived, so Clare was even happier surrounded by adoring grandparents. Once she was brought into the cath lab, she was given her "happy cocktail" of ketamine and versed. (I will have to post photos once we are home. Clare was ultra-mellow after her drink and insisted on wearing the hospital johnny, way-too-large latex gloves, and green sunglasses. It was very funny!) Shawn and I said our good-byes to our sleepy girl and handed her over to the anesthesiologist.

We just had our hourly update, and Clare is doing well. She has had some blood pressure drops, which they are controlling with dopamine, and is already receiving one blood transfusion. The cardiologists have started using balloon dilations in her left pulmonary arteries. The nurse reported that "there is a lot to do," so Clare will be at least another couple of hours in the cath lab. Thank you, everyone, for all the prayers. We know Clare is in good hands here at Children's, and even better hands with God.

Monday, September 10, 2007

The Stuff We Don't Talk About

Shawn and I had a good cry together last night. Clare goes back into the hospital on Thursday this week for her cardiac catheterization on Friday. She has come through five caths already, so I know her track record is good. Yet with each looming cath, the fear creeps back in. I hold her longer, find more patience with her toddler obstinacy than I thought I had, run my fingers through her curls and kiss her smooth cheeks as often as she lets me. I relish in her big toothy grin, blowing me kisses and waving bye as she rounds the corner into another room.

(There is a pattern in my blogs - nights that Shawn is out-of-town, I find myself in the basement alone, thinking these thoughts, depressing myself. When I really should be in my bed, watching a movie, and eating ice cream. So, you may want to take the opportunity and do that now. I am not making excuses for my thoughts. I am warning you that they are dark, and I need to get them out.)

Lately, we have noticed that Clare desperately needs this cath. She has high blood pressure but the fact that she could not pump any blood out at the blood draw last week signifies low blood pressure. I know her blood pressure must be all out-of-whack again (my medical term for it). I know her heart is working too hard. But tell that to a 2-year old who has recently learned to walk. Who finally has the means to explore this great big world (or at least the first floor of our house). She does not want to stop. Clare wants to go, go, go. But the fatigue is there. And with the fatigue comes crankiness, frustration, and tantrums. Tantrums which drive my stress level through the roof because I can visualize what it is doing to her heart. Add to that a 4-year old who understands his parents are on edge about something (which to him comes out as snappish and short-tempered) and so he responds to these undercurrents with his own outbursts of anger. And then add a normally happy, content 4-month old who is experiencing his first virus, complete with fever, rash, and diarrhea, so he is inconsolable unless he is held and nursed around the clock. The equation adds up to one mommy and one daddy who are maxed out at the moment.

In church yesterday, we were sitting behind a middle-aged couple we often sit near (the gentleman is the same one who I caught holding hands with Clare one time). Clare has charmed this man, so he always has a smile and greeting for us. I imagined arriving at church without Clare, being questioned by this gentleman about her absence, and explaining WS, her heart defects, and her passing. At the same time, while the congregation sang "On Eagle's Wings" (a beautiful hymn which is often played at Catholic funerals... "And He will raise you up on eagle's wings, Bear you on the breath of dawn, Make you to shine like the sun, And hold you in the palm of His Hand"), Shawn was imagining that hymn being played at Clare's funeral. Why do we imagine these things? I tell myself that it does no good to dwell on the depressing. Yet part of me feels that if I can plan these scenarios out, walk myself through them, if someday, I am forced to actually live them, I will be prepared. I know this is a big fat lie.

Today I read an article in Brain, Child about the death of a child. (Yes, I question why I am reading this article when I am already thinking morbid thoughts, but I forced myself to not be a wimp and finish the article.) The author writes, "Before becoming a mother, I never knew that having a child means crafting not only a life but also a death, that each of my babies would carry within him or her not only the potential for death but the inevitability of it." I was too new a mother when Clare was born to know what motherhood was like without the very real presence of death lurking in the background. When Jamie was an infant, I followed all the advice about preventing SIDS. I cut his grapes in half to protect from choking. I never left him unattended in the bathtub. Yet I never thought anything would really happen to him. The mantra is that that happens to other families. But the reality with Clare is that it just doesn't happen to "others." It may be us. And I know I am trying to come to some sort of terms with that knowledge.

In all probability, Shawn and I will outlive Clare. Given the severity of her heart defects, her average lifespan is 50 years old. Younger than my parents are now. That's a hard pill to swallow. But what I wouldn't give right now to be guaranteed those 50 years with Clare. Fifty wonderful years. I don't care if she still lives with us, is a bagger at Hannaford, whatever. I just want those years. All the years I can get.

Thursday, September 06, 2007

Confessions of a Furry Red Monster Lover

Clare is in love. And, yes, he is furry and red. I am always amazed at the affection for Elmo that seems to instantly spring up in our house. Maybe it's those big googly eyes? That annoyingly high voice? His big never-ending grin?

When Jamie was about 20 months old, he started talking about Elmo. He did not watch Sesame Street, we had no Elmo paraphernalia, never talked about the little guy. But, sure enough, Jamie knew who he was and pointed him out in stores, in magazines, anywhere he saw Elmo. (Maybe it's pre-programmed into modern toddlers' heads.) He received a large Elmo as a Christmas present and they were immediate best friends. We did not, however, go overboard with collecting Elmo gear (unfortunately that phase would come later with ninja turtles and superheros). Jamie had an Elmo-themed party for his second birthday and a couple board books - that's about it. So although Elmo was Jamie's constant companion for about a year, we were not on Elmo overload.

Flash forward two years. Lo and behold, Clare knows who Elmo is as well. She has seen maybe one episode of Sesame Street (as Elmo is now too babyish for Jamie, Clare watches "older" shows with him such as Dora and Backyardigans). I do not even know where our two Elmo books are on the shelf. Jamie's former beloved Elmo is buried in the back of the stuffed animals. We have been Elmo-free for at least a year now. But, for some reason, Clare can recognize Elmo anywhere as well - she points and says "Elmo" whenever she glimpses something that even kind of (sometimes not really) looks like Elmo. A new generation of Elmo-lovers has begun.

Clare has been having "violent" temper tantrums for a few months now. I say "violent" in quotes because I do not know quite how to describe them except she needs to hurt herself during them and cannot calm down on her own. She often pulls her hair or bites her fingers and will scoot on her back across the room until she can hit her head on something hard, such as the wall or piano. Her OT and PT explain it as she needs the sensory input as a coping technique during a tantrum. Well, obviously, we don't like that she is hurting herself and do not want that to escalate, so we have been looking for other ways that Clare can soothe herself. Especially for the future when Mommy and Daddy cannot be there with her to help her calm down (such as when she goes to preschool). Enter Elmo. He is Clare's new transition toy. We found the cuddliest, softest Elmo we could find and purchased three of them (one for upstairs, one for downstairs, and one for on-the-go).

We were unsure how Clare would take to this because, although our kids have favorite toys, none of them has ever had a "lovey" that they have insisted go everywhere with them. The three Elmo's appeared in our house and the connection was, once again, immediate. Clare's face lit up, she uttered one word, "Elmo," and a friendship was made. Now Elmo goes everywhere with Clare. He can be seen either dragging along behind her or cuddled in her arms throughout the house. He is showered with hugs and kisses. He sleeps secure in her crib, snuggles with her in the car seat, and, yes, he is thrown and bitten during tantrums (better than biting herself!). So Elmo is doing his duty right now. Thank you, Elmo.

Wednesday, September 05, 2007

School Daze

Jamie's first day of school. It was a big day for us! We started our new tradition of taking "first day of school" photos on the front steps. When we pulled up to the school, Jamie bounded out of the car, slung his backpack over one shoulder (he explained to his old, old mother that this was the way the kids carried their backpacks - as if I had never been to school and wore my backpack oh-so-cool), and walked ahead of us into the building. He graciously allowed us to take more photos and pin his name tag on him, then he bestowed kisses on everyone and entered the classroom. He never once looked back.

When we visited Jamie's preschool for his open house, we trooped the whole crew in. Clare did fairly well playing with the older kids (it is getting easier now that she is walking) and instantly latched onto a baby doll and carried it around with her. But then she became tired and cranky, so she sat in the stroller in the hallway to eat a snack. (The room was too small for the 19 preschoolers, parents, siblings, teachers, and our double stroller.) I stayed in the hallway with Clare and Simon, while Jamie sat with his new classmates for snack time, and Shawn stood with the rest of the parents for some final information on starting school. I strained anxiously to hear what the teacher was saying to the parents while keeping an eye on Clare and Simon and craning to watch Jamie eat his snack and interact with his new friends. I was very proud to hear him say politely, "Excuse me, I did not get a drink" as the juice bottle passed by him. I was trying so hard to peek between the adults to watch my boy. And it struck me - I would not be able to watch Jamie at school. I would not be there physically with my eyes and ears to see what went on in his school day. I would have to rely on Jamie's word and his teachers for what he was doing in school. Oh sure, he will bring home beautiful art projects and tales of other students. I will have a chance to discuss his progress with his teacher and peruse his folder of work on Curriculum Night. But I will no longer be present at these events. I am now a bystander instead of a participant in part of my son's day.

I stood at the door of Jamie's classroom for a few seconds, watching him instantly start to play trucks with another boy. I desperately wanted to go in there with Jamie. Walk him to his seat, pour his juice for snack, help him choose his colors at craft time. Instead I have to trust that he is okay. He has wonderful teachers and he has the skills and values that we have instilled in him to get him through his school day. I am proud of the caring, smart, funny young man that we are raising. And it was time to let him go into the world independent of Mom and Dad... just a little bit at least.

While Jamie was at school, the four of us headed over to the hospital for blood draws. We are participating in the Williams syndrome research study going on out of the University of Nevada. They sent us a kit to return with blood from Clare, Shawn, and me. After making call after call to find a place that would draw the blood without orders from a doctor and let us keep the blood to send it out ourselves (since we had the kit and all the materials for shipping), we finally discovered our local hospital's outpatient lab would do it. Since Shawn was already taking the morning off work because it was Jamie's first day of school, we thought it would be the perfect time to head over to the hospital. I called FedEx to arrange a pick-up for the blood since it needed to be in Las Vegas the following morning. At the hospital, the phlebotomist put a little wrench in our plans when she announced that, at 20 pounds, Clare could only have 10 cc's of blood drawn per their guidelines. The genetics lab, however, wanted 16.5 cc's - almost double. After having the lab manager talk to a doctor at the hospital, discuss the situation, and discuss Clare's condition, it was determined that Clare was "hemodynamically stable" for the full blood draw (we learned a new term today!). That was when Clare's veins threw a huge wrench in the plan. After fishing around in the right arm with no luck, the phlebotomist tried the left arm. Although a big vein was found, Clare's body would not pump the blood out. No matter what the phlebotomist tried, no blood would come out. So Shawn and I had our blood drawn, took our little tubes with us, and were on our way. I was fuming in the car on the way back to school to pick up Jamie. Two hours in the lab, countless phone calls to set all this up, and lots of stress. To do it all over again in the near future. As Shawn reminded me, "The only thing you can't control is life."

So today was a big day for all of us. Not surprisingly, Jamie loved school. He cannot wait to go back on Friday. I am happy that at least one person was spared the torture of the hospital blood lab today! Jamie will finally not have to come along to all the countless appointments we have, since I can schedule them during his school time. Next week, Clare and I start swim and gymnastics classes, so she is going to enjoy her time as well. And Mommy and Daddy are learning to let go. One small step at a time.

Tuesday, September 04, 2007

My Day

My day:
- Jamie wakes up at 5 am. This is after a night of getting up every 90 minutes because Simon is going through a growth spurt.
- Simon has two explosive bowel movements requiring complete clothing changes and baths. The second one also requires a complete clothing change for the defenseless mommy he exploded on.
- Clare falls for the thousandth time. This time, however, she splits open her lip again (after doing this already on Saturday). Shawn walks in from work to find Simon screaming in the playpen, Clare screaming and bloody on my lap, and Jamie frantically following my orders of finding diaper wipes and tissues to staunch and clean up the blood.
- Clare pees all over the bathroom floor after she is done with her bath. More laundry to throw in with the poopy and bloody clothing. Might as well make it a whole load.
- Shawn and Jamie call for me to come upstairs. Clare has a stomach ache from eating too much chocolate and almost throws up. (Both Shawn and I allowed Clare to have two big pieces of a Hershey's candy bar after dinner, not realizing that the other parent had done the same.) I sit with Clare and the "spit-up bowl" for a while.
- I return downstairs to find the kitchen sink overflowing with scalding water. It seems I forgot that I was running water to soak some dishes prior to being summoned upstairs.
- One last huge temper tantrum from Jamie because, by the end of the day, he is so exhausted from being up at the crack of dawn.

On the other hand, this is my day as well:
- Simon has his four-month photos done at the photographers. All the kids behave beautifully and Simon's photos come out gorgeous.
- Both Clare and Simon take a 3-hour nap at the same time. I actually am able to scrub my shower, do some laundry, concoct a marinade for steak and shrimp kabobs, and bake banana chocolate-chip bars.
- Jamie and Clare receive packages of stickers in the mail from Grand Dad. The only thing more exciting than mail is mail that comes with stickers.
- Jamie, Clare, Simon, and I take a walk on a sunny, breezy early fall day. Jamie and Clare love riding in the wagon, and Simon takes in the view from the front carrier.
- Shawn makes s'mores on the grill, which we all enjoy after a fabulous dinner outside.
- Jamie and I make homemade Cherry Garcia ice cream. Yummy!
- Clare stands up from the middle of the floor all by herself. She is proud to do it again and again for everyone.
- Jamie and I get his backpack ready for his first day of school tomorrow.
- Jamie, Clare, and Simon are all fast asleep in their bed. Now it's my turn.

Friday, August 31, 2007

Skinned Knees

What my world has come to when I am actually excited that Clare suffered her first set of skinned knees on the playground this morning. Whooo hooo, Clare!