Construction Photos

After two months, our addition will be done in a couple weeks. Like pregnancy, it seems like the new addition would take forever, but now, looking back, I cannot believe how far we have come and that it is almost done. Other than our garage doors and row of small windows above the doors (which are on special order), the outside is complete - windows, siding, addition roof, new roof on house, doors, retaining wall, etc. Our driveway and sidewalk are being hot-topped as I type, and we are excited to start being able to park the cars in the garage at night. (We've done it a couple times to try it out, but it's hard to get over the lip where the driveway should be.)

Inside, the contractors are dry walling. Not my favorite part of the construction as it means the huge mess has moved inside my house. But the dry walling means we have been able to do some of the other exciting parts, such as choosing our paint colors, flooring, and light fixtures. We are definitely getting closer to the finish line!

April 13 - Our house before construction began.

April 13 - The excavator begins digging.

April 28 - Framing begins.

May 11 - Working on the roof and siding.

May 28 - Master bedroom.

May 28 - Master bath.

Simon

I don't know if it's a blessing or just cruel that I forgot how much worse 3-year olds can be than 2-years old! Clare's development has not been typical in so many ways, so it's been four years since we've had a typical 3-year old in our house. And Simon is giving us a run for our money!

Simon is a talker. And a charming talker at that. He can melt your heart with his sweet little face, big brown eyes, and words of love. His catch phrases right now are "I have a joke" and "I have a plan." They are then followed by some sort of imaginative nonsense that only a 3-year old can invent. The kind of nonsense that always elicits a dutiful smile or laugh from a doting parent, even though you have no idea what they're talking about. However, the talking is also non-stop, and Simon chatters right through everything. Not only events and activities (Mass, plays, school events, the grocery store, an hour's car ride) but any form of discipline, instructions, or other conversations in general.

Simon has also become the Master of Button Pushing. In two ways. The first is the obvious way in that he wants to be in control of every button there is in his environment. All the light switches, the TV power, the switch for the garbage disposal, elevator buttons, handicap door-opening switches, the dishwasher. If there is a button, Simon demands that it is his right to push it. Which leads to the second way in that he knows how to push the buttons of his older brother and sister. Many times these two button pushings collide, and he will race Jamie to be the first one to push the elevator button at the doctor's office (I have yet to discover the allure of this coveted prize - the pusher of the elevator buttons - but since we are at the doctor's frequently, it is a weekly battle.) Simon knows just how to make Jamie and Clare angry or upset. He may be the smallest of the three, but he can hold his own when it comes to the mental games of sibling rivalry.

Having a 3-year old in the house is challenging and, quite frankly, mentally exhausting at times. Simon very rarely naps anymore, yet there are days when he needs to. But if he does nap, then he is awake until 8-9pm, and I can't have that! (We have always had a fairly strict 6:30-7pm bedtime. I know many people think that's so early, but it works great for our family and my sanity.) Yet, in so many ways, Simon is the sweetest of my children right now. He is still very snuggly with me (Clare is, too, but Jamie is starting to outgrow that), and still often climbs into my lap. He loves to be read to and would read books all day long. He cannot get enough of books, and I love that about him! Simon has also taken quite an interest in doing what he calls "schoolwork" - coloring or preschool workbooks. He is very smart when it comes to numbers, colors, shapes, letters, and just loves doing activities involving those things. He is ready for preschool in the fall, and although he can still be clingy and a little shy at times, I know he will love it!

It is fascinating to watch Simon's imagination develop. He reminds me so much of Jamie at that age. He loves to play with his dinosaurs, Jamie's superheroes, and Clare's princesses. He will play quietly by himself in the playroom downstairs for an hour (and actually playing with toys, not getting into stuff in the storage room or Shawn's office, like Clare would be!). In many ways, I can trust Simon more than I can trust Clare. We may have our challenging moments, but, at the end of the day, when he puts his still-chubby little arms around me and gives me a big squeeze and tells me I'm a "silly head," it's all worth it!

Excuse List for Blog Neglect

1. Unseasonably sweltering late May/early June weather zaps my energy.
2. Men swarming my house doing various projects causing all kinds of messes.
3. Using whatever energy the heat has not zapped to clean up the above messes at the end of each day or I go nuts.
4. Three soccer activities per week.
5. Getting Jamie's migraines under control.
6. Scheduling dental appointments and renal ultrasounds at Children's Hospital for Clare.
7. Finishing end-of-the-school-year first grade project on Arlington National Cemetery, Tomb of the Unknown Soldier, and Memorial Day.
8. Husband away in Boulder, Colorado and Atlantic City (business not pleasure).
9. Keeping the toddler from killing herself on the playground. Violet loves the slides and stairs and ladders, but has no common sense.
10. Jamie's production of "The Emperor's New Clothes" and now Clare's ballet recital of "The Little Mermaid." Rehearsals, rehearsals, rehearsals.
11. Choosing shower, tub, tile, paint, doors, windows (exciting to be at this stage, but lots of decisions!).
12. Special Olympics Youth Athletic Program and its big Summer Games next week.
13. Throw in some fun random activities like hiking Quechee Gorge or impromptu weekend in Portsmouth.
14. A 3-year old who no longer naps, but desperately needs to. (Simon, you're ruining my quiet time!)
15. The thousand of other little daily chores to keep this house running (somewhat) smoothly.

Welcome to Neverland

Our Neverland Birthday Party

Shawn created a treasure hunt complete with a treasure map puzzle. The hunters (known as the fairies and the Lost Boys) had to answer questions about the movie Peter Pan. If they answered correctly, they received another piece of the map. When they fit the piece correctly into the puzzle, it showed them where to go for their next clue. The final piece directed them to a treasure chest - full of swords and fairy wings. Shawn and I conceived the ideas for the games together, but he designed them all. He needs to go into the party planning business!

Jamie helps Simon open presents. It was an unseasonably HOT day for the first of May, and everyone was glad to have a chance to cool off inside.

Another party game was tossing stuffed crocodiles at Captain Hook's pirate ship. The girls all looked so sweet running around with their brightly-colored wings on. (And the boys were warned many times about the foam swords! Perhaps those should have been handed out at the END of the party!)

Simon and Clare blow out the candles on their Neverland cake. (Which was my baby, and came out quite cute, if I may pat myself on the back!)

I bought these t-shirts off eBay for the birthday girl and boy to wear.

Violet

Violet turned 15 months old at the end of April, and I intended to write a post to commemorate that milestone, but it took me three weeks to do so! (And now another week to actually finish it, since Violet will now be 16 months old on Friday. How life is flying by!)

Even though my four children are each only about two years apart, I tend to forgot much about certain stages of their development until I experience it again with the next child. In Violet's case, however, she has been my earliest walker, runner, and climber, so at times, I feel like I am starting all over again with this parent stuff. The child is all over the place, but with almost no common sense (or fear)! Jamie and Simon were both around 15-16 months when they started to take steps and were fairly cautious, and Clare was almost 2 1/2 years old (and extremely cautious). So to see this little scrap of a girl literally running around still amazes me. She looks too tiny to be doing that! And not only running around, but having definite ideas of what she wants to do with her time. Her current favorite pastime is to push the baby doll stroller around (usually with a baby doll in it, but she does not mind if the seat is empty). What she insists on is having some sort of "purse" dangling off her arm while she does so. The purse can range from anything as random as a stuffed animal monkey purse to one of my red Target reusable shopping bags. If that purse falls off her arm, watch out - she is one ticked little girl!

While Violet has been the most advanced of my children when it comes to gross motor skills, she is not a talker like Jamie and Simon were (and still are!). Jamie had about a dozen words at a year old, and I vividly remember at his 18-month appointment, the pediatrician asked me how many words he had. I answered that I stopped writing them down when we reached 100 words, so I wasn't sure. The pediatrician laughed and said that he typically looked for between 12 and 30, so Jamie was doing just fine! Jamie being my first, I had no idea how verbally-advanced he was. Violet has no actual words yet, but she is a babbler, a shrieker, a giggler, and clearly understands everything we say to her (definitely not a quiet child!). She is still very attached to me, but has quite the silly personality once she warms up to other people. Violet is at a delightful age, and we all love watching this little spunky person doing her thing!

Snatches of Conversation, Part 2

I love that I never know what is going to come out of children's mouths! Every day is an adventure.

(Yesterday, after dealing with four grumpy kids the majority of the day, Shawn gave them a talking-to about their behavior and Mother's Day. Then they came up to me one-by-one.)

Simon: Sorry, Mommy. Happy Mother's Day! I love my new dinosaur bucket in my bedroom.
Jamie: I'm sorry, Mom. Happy Mother's Day! I love you. (with a big hug)
Clare: I'm sorry you are mad at me.



(This morning as I am trying to do something with the rat's nest of Clare's morning hair.)

Me: Clare, how about if I do your hair half-up?
Clare: (Now getting upset) I don't want happy hair! I want angry hair!

Snatches of Conversation

(In the car)

Clare: Violet, stop hitting me with your baby doll!

Simon: Just deal with it.

Happy 3rd Birthday, Simon!

Simon celebrated his third birthday yesterday (pics to follow because Blogger and my laptop do not get along). Since his birthday landed on a Saturday this year, we had a big party on his actual birthday (and combined celebrating Clare's birthday, which was a month earlier) with family and friends. One of Clare's favorite characters is Tinkerbell, so we decided a Peter Pan/Tinkerbell/Neverland party was a great theme for the two kiddos. Our backyard was hopping with fairies and pirates!. Simon is the last birthday of the calendar year in our family, so he has been waiting patiently (and sometimes not-so-patiently) for the big day.

Simon has been congested and coughing for a couple weeks now. Since it coincided with the explosion of tree pollen and no one else was affected, we chalked it up to allergies. It could still have been allergies, but it settled in his chest, and come late afternoon, he spiked a high fever. Poor birthday boy! I ended up bringing him over to our Urgent Care clinic last night after the party. There was literally no other patient there while we were there, so Simon, Violet, and I were treated like royalty. Once the nurses and receptionists found out it was Simon's birthday, they hyped it up even more. Since his oxygen stats were a little low, his fever was 103 on Motrin, and his chest sounded raspy, Simon had a birthday chest x-ray, which showed that he now has bronchitis. After 24 hours on his antibiotics and nebulizer treatments, he is fever-free today and feeling so much better. He still has a barky cough, but that could linger another couple of weeks.

So that is why his birthday post is a day late! Simon was still able to enjoy most of the party, and he spent a lot of time today enjoying the plethora of dinosaurs and trucks that have now invaded our house. Happy Birthday to the sweetest 3-year old around!

Chance Encounter

Today was allergy clinic day, one of my least favorite activities in the world. Not only because my son has to receive two allergy shots and he usually has a pretty substantial reaction to the serum injected (the arm that receives the tree serum usually becomes red and swollen in a 2" diameter around the injection site), but because the medical receptionists are less than friendly to my large, often loud, brood. They obviously never had to wait in an unfriendly waiting room for at least 30 minutes post-allergy shots with four children. No amount of toys, books, snacks, or admonishments can keep four children from wanting to play, laugh, and possibly even run around for that amount of time. And today was no exception.

After staking our claim to a circle of chairs and cornering the only wooden beads toy in the waiting room, we began to wait out our 30 minutes post-injections. The kids scored about 10 stickers from various receptionists (they have learned to bypass the Allergy counter and scope out the counters at the other end of the waiting room, hitting up the sweeter women who work at Internal Medicine and Family Practice). Clare went to the bathroom twice. The most sour-faced receptionist spoke to me once. ("I just wanted to let you know that the doors open out, so I don't want your children playing in front of them in case they get hit." Which they weren't, and which we know since we've been in the clinic about a thousand times.) I had to bring Clare back to our area twice after she stared down two adults (both texting on their phones, which fascinates her).

After bringing Clare back the second time, we saw them walk in. Another mom with her four kids in tow - two girls, two boys. And I knew instantly that there was something "up" with her youngest daughter. (No, I am not politically correct.) They sat in the next group of chairs. This mom's three oldest (all probably older than my kids) sat dutifully on their chairs while waiting for their appointment to be called. But the little girl made a beeline for us. Specifically for me and Violet, who was clutching one of her baby dolls. She was fascinated with Violet's baby doll. I helped her and Violet work out an arrangement over who got to hold the baby doll when. That's when I realized that Clare was standing in front of the other mom, giving her that big wide-eyed stare. I called Clare back, and the other mom came over, too. I simply stated, "Clare has Williams syndrome." Now I am not one to make those pronouncements to random strangers. I have never felt the need to broadcast that information. Even when I know people are wondering what's up with my child or ask questions, I rarely bring it up. It's not that I am embarrassed or I feel like we have something to hide. I just don't feel like it's relevant or makes a difference sometimes. Clare is who she is. But with this mom, I sensed a kindred spirit instantly. And I was right. Her reply was, "Bridgette has Noonan syndrome."

You see these other kids and their families sometimes. On the playground. At the mall. In the grocery store. And I always wonder. I wonder what syndrome has affected their family. I wonder what their journey has been like to get to where they are. I wonder if they sometimes feel all alone in this world. I wonder if they look at my child and wonder the same things about us. I am glad I said something today because it gave me the chance to talk with another parent. To exchange some details about our daughters' syndromes (Noonan syndrome is also characterized by pulmonary stenosis) and even gain some new insight into other forms of therapy (she told me about pet therapy). Just to have the reassurance that we are not alone in this journey, and there are others out there who understand.

Beginnings

The addition project has begun. It is moving V-E-R-Y S-L-O-W-L-Y in my opinion, but we've had some rain, and now I think they are waiting for the building inspector to approve the footings before the excavator returns to backfill. Right now, our front yard is half-covered with lots and lots of dirt. But I can look out my kitchen door (which remains securely locked for the time being since it drops into a big hole) and kind of visualize what it's going to look like. I can't wait for the framing stage to see the addition take shape.

Spring is here to stay in NH, and our wall garden is growing. (Although we did have snow one morning last week!) All the bushes from last year survived the winter and are coming back up and the new tiger lilies that Shawn planted at the end of summer are flourishing. We had gorgeous hostas in the front yard that were in danger of being excavated, but Shawn was able to get those unearthed and transplanted to around our deck. I hope they survive their move and bloom this summer.

Jamie's travel soccer began two weeks ago, and I am already exhausted. Two evening practices and one weekend game per week is a bit much, in my opinion, but I have to admit that his soccer skills are taking off. Jamie loves it - soccer is definitely his sport. He played two seasons of baseball and did not want to do it this year. Too much standing around and waiting! He is a kid on the move. We are going to try to catch a Revolutions game this summer (New England's professional soccer team). I never thought I would be a soccer mom, but here I am. Shawn and I ruled that the two older children are allowed a maximum of two activities or we would go crazy. So Jamie is doing soccer and his school's play, and Clare is doing ballet and the Special Olympics Youth Athletic Program has started up for its spring session.

We are at that time of year when everyone has their doctor's appointments. Jamie and Clare both have follow-ups with the endocrinologist in the near future (Jamie's is tomorrow with blood work... yuck), all four kids have their pediatric visits (annual physicals for the older three and Violet's 15 months well-baby visit), and Clare had her work-up with the new cardiologist a couple weeks ago (more about that in a moment). Other than Violet (who is healthy, walking, babbling, doing everything she should be doing and nothing she shouldn't!), I have a list for each child of what I want to discuss. Jamie's headaches have gotten out-of-control again. He has had a headache or migraine every day for almost a week now. His migraine medication does not always work, and I feel like every morning he needs Tylenol to even get out of bed. His allergies seem to be under control now that he is on allergy shots, so I can't blame it on that. Sometimes I feel that his week is too stressful between school all day, homework, school projects, and soccer, but it is still not normal for a 7-year old to complain of a headache on a daily basis and end up vomiting fairly frequently. I am ready to sit down with the pediatrician next week and figure out where to go from here. I think that Simon is starting to develop allergies as well. He had eczema as a baby like Jamie did, and there is a link between having eczema and developing seasonal allergies. (Shawn, too, has battled eczema and has allergies.) Neither Clare nor I have ever had eczema and we are not affected by allergies. Thankfully, Violet has never had eczema either, so hopefully the girls are out of the woods when it comes to seasonal allergies! Ever since the tree allergens have started full-force (and where we live is on a high level right now), Simon has started with the runny nose, congestion, and shiner eyes. I am giving him a small daily dose of Zyrtec, but can't help but wonder if we're just going down the same road as we did with Jamie. Jamie did not have his allergy testing until age 5, and I don't know if they can test Simon sooner.

I took Clare down to Boston Children's Hospital two weeks ago for another echo, EKG, and to meet the new cardiologist. It was a 9-hour trip (3 hours of lovely Boston traffic and 6 hours of hospital time), but worth every minute for the hour we spent with Dr. S. Dr. S is a highly-recommended pediatric cardiologist who specializes in cardiac defects associated with genetic disorders and Williams syndrome in particular. The excellent news is that Clare's echo and EKG confirmed what her NH cardiologist had told us. Her main pulmonary arteries have grown a tiny bit and her gradient measurements where her stents are placed are minimal, between 10-18 mmHg. (To compare, when Clare was very sick as a baby, her PA gradients were in the 60s). Clare's aorta still looks fabulous with a pressure gradient of almost zero (pre-surgery, Clare's aortic gradient was 125 mmHg - this means that if Clare's systolic blood pressure reading was 100, the actual systolic pressure going across her aorta would have been 225 - you do the math, not so good!). This just illustrates how "healthy" Clare's heart is now compared to where we were five years ago. Clare's only real problem right now is that her distal pulmonary arteries are hard to see on an echo and measure, and those little arteries are still small and narrow. The only way (other than a cath) for the cardiologist to get an idea of how those pulmonary branches are doing is through a lung scan and measuring her right ventricular pressures. Her last lung scan in October was excellent (which means the blood flow to each lung is fairly even) and, at this appointment, her RV pressures were less than 2/3 systemic. They are creeping up again, since in April 2009, the pressures were less than 1/2 systemic, but for now, they are still at an acceptable level. So, in regards to Clare's pulmonary stenosis, we are going to follow up with Dr. S in nine months for another echo, EKG and lung scan. In the meantime, Clare is still off her blood pressure medication and her readings remain borderline. Dr. S went into a very long, very thorough explanation of why sometimes a person may need a high blood pressure to ensure proper blood circulation throughout their body (an explanation which made a lot of sense to me and one that I had never heard before - this is why we switched cardiologists!). There is a slight possibility that Clare could have renal stenosis (narrowing in the arteries leading into her kidneys), so the next step is to have a renal ultrasound in a couple months. In the meantime, we will continue her off her blood pressure medication and continue to have the school nurse take measurements once a week and then fax the measurements to Dr. S. So there is your medical lesson for the day. Whew!

Fresh Air

We are stagnant during the winter - maintaining some semblance of preserving our sanity while surviving the cold, snow, wind, flu, colds, and stomach viruses. But now that spring is around the corner, there is lots of change in store for us.

When we bought our house four years ago, Shawn and I discussed adding a double-car garage. We have the space for it, but always envisioned this as a project down the road. When we were pregnant with Violet, we dreamed about how awesome it would be to, not only have the garage, but add a master bedroom and bathroom on top of it. Once Violet was here, in her own room, and Simon moved into the bedroom with Jamie and Clare, we thought wouldn't it be wonderful to cut our existing master bedroom into two bedrooms. Then we could have a boys' room, girls' room, nursery (you never know!), and a guest room. As the kids get older, they could eventually have their own rooms. Dreams, dreams, and more dreams. Some dreams do come true! Any day now, they will be breaking ground for the addition. It's going to have everything we wanted - two-car garage, master bedroom, walk-in closet, master bath with a jacuzzi tub (that's mine!), mudroom, and our old bedroom will be converted into two rooms. We are blessed in so many ways, but we also have so many challenges in our life and have been thrown so many unexpected curve balls, that I am still in some disbelief that this is actually going to happen just like we dreamed it would.

We will be registering Clare for kindergarten next week for next fall. There is still so much uncertainty about exactly how this is all going to go. Clare's preschool teacher has been awesome discussing it with me as things come up, but I am such a planner and organizer that I hate the unknown part of it all. We, as parents, have definitely decided we want Clare to go to our district school, which is one of the best in the district. The only reason why I was not sold on this idea is because the kindergarten program is only a little over two hours a day. Right now, the special education team is planning on including Clare in a typical kindergarten classroom, so I was concerned about her being pulled out for services three hours a week. That's almost a third of her time in class. We could fight to have her placed in a full-day program at a different school, but I don't want to take her out of our district school and then transition her again in first grade. It's so confusing sometimes! You want to make the right decision for your child, but I honestly don't know what the right decision is. I want Clare to be included in a regular classroom, to be with the children she will be in school with for years, to have the chance to make friends. She needs all her special education services, but she also needs to be in her kindergarten class. She can spell her name now (drilled into her! C-L-A-R-E!), but has difficulty forming letters (part of that difficulty with fine motor skills), so she cannot write her name yet. She knows all her colors after months of working on it, but is still sketchy on shapes, numbers, and letters. She has made tremendous progress this year, but I think of where Jamie was when he was going to kindergarten, and Clare has a long way to go. I don't expect her to be where Jamie was at that age, but she is going to be with other children who are, and I just want her to be able to keep up. Clare has loved her preschool and has done so well in her self-contained classroom. I am scared of the unknown of placing her in a regular classroom. This is where the Mommy-protectiveness is kicking in.

Jamie was invited to join a travel soccer team this year. He was asked to play last year and we said no, feeling that six was too young to be on a travel team. After playing a season of outdoor soccer this past fall and currently wrapping up four months of indoor soccer, Jamie has demonstrated both that he loves soccer and that he has soccer skills. When his coach brought up the travel team again, at first we said no. After some thought, though, we decided to give Jamie the choice between baseball or soccer (he has played t-ball the past two springs). Jamie immediately chose soccer. It's a bigger time commitment than we've been used to, but I know it's going to be a great experience for Jamie. He has a terrific soccer coach and will be playing with many of the same players on his indoor soccer team. Plus it forces us to not plead tiredness and get some fresh air two nights a week after dinner and run around!

After watching Jamie play sports for two years, Clare is excited that it's finally her turn to have an activity just for her. She started taking official ballet classes two weeks ago and loves it. To test the waters, I signed her up for a little "Creative Movement" class at the YMCA over the winter. The girls do a little bit of ballet, then basically get to free-dance. She did this class for a few months. She paid attention, took it seriously (for the most part!), and loved every minute of it. Those were my three conditions she had to meet before I signed her up with a ballet studio. I know Clare will not be a ballerina. I know she will not be able to do everything at first, but I was more concerned that she would not be a distraction in the class. Clare did awesome, and I am so proud of her! (Not to mention that she looks so stinking cute in her leotard!) So we signed her up with a local ballet studio for a weekly class. She is in a petite ballet class with other 3-5 year olds and will even be in a show in June. Her class are playing the part of fish in The Little Mermaid. I was able to watch her class perform their little solo (it's literally about two minutes long!) last week, and thank goodness I had a squirmy Violet to also occupy my attention or I would have started crying. Clare was grinning away, doing her moves (don't ask me what anything is called), and so precious! She truly loves her dance.

And thankfully Simon and Violet still go with the flow! (Although Simon has stopped napping, which really ruins my quiet afternoons!) Some days are spent running around like crazy with the older kids' activities, that I cherish the calmer times I have with my little two. They are so sweet and their needs are so simple! I know our calm days are numbered in the near future once the addition gets under way!

My Girl is Five Fingers!

Happy 5th Birthday, Clare! It is unbelievable how much your life can change in an instant, and ours surely did five years ago today at 8:52pm! You have brought us so much joy, happiness, and love these past five years. All our challenges, struggles, bad days, and rocky roads have been worth every second of having this sweet, often silly, person in our lives. We love you, Clare Bear!

Dress-Up Diva

Clare loves to ham it up for the camera and has certain poses that she strikes. Auntie Erin gave her this beautiful dress for Christmas (with a matching baby doll dress), and Clare had fun prancing around in it.

Leprechaun Traps

Even though we don't really celebrate St. Patrick's Day in our house, Jamie and Clare came home from school on Monday and Tuesday with ideas of setting "leprechaun traps" throughout the house. Jamie hoped that he would be able to catch a "real live leprechaun" (reporting that one of his classmates claimed he has a friend who caught one), and Clare sincerely hoped that, if they did not catch a leprechaun, they might at least catch some chocolate coins.

Jamie set about last night with his traps. His most elaborate trap involved placing a fake coin in the bottom of a tall cup. He then leaned a ladder against the cup and placed a sign on the outside that read: "Gold inside!" The sign would entice the leprechaun to climb the ladder, then he would fall into the cup attempting to reach the coin. Another piece of paper acted as a cover so the leprechaun could not escape. Genius! As Jamie set his traps, he worried in all seriousness that he "hoped the leprechauns knew English." I assured him that, to the best of my knowledge, leprechauns were typically Irish folk and did indeed know English.

Alas, that tricky leprechaun (or "Lucky the Crafty Leprechaun" as his mocking return note read) got the best of the kids. He not only took Jamie's coin, but was able to escape the trap and vanish again. He was kind enough, however, to leave some chocolate coins around the house, which did appease the leprechaun-hunters.

My Old Friend Spring

Spring is coming. The birds tweet loudly in the morning, the temperatures are rising into the 50's some days, and there are shoots in my garden starting to break through the dirt and rocks. We've had some pleasant afternoons playing in our yard and street. Everyone is breathing in the fresh air, and I am hoping that winter is truly over and that the fresh breath of spring air will push the rest of the nasty germs away.

I am looking forward to spring, but there is always some illness that strikes our family at the end of March/beginning of April every year without fail. 2007 and 2008 both brought stomach bugs that hit everyone and landed Clare in the hospital for a couple days. In 2009, we were hit by a stomach virus again, but Clare thankfully avoided the hospital for that one. Instead, she was having numbness and tingling in her arm and her A-V fistula and aneurysm were diagnosed, which resulted in her summer surgery. 2010 is going down the same path unfortunately. Our house has once again been hit by some nasty stomach bug (why do we seem to avoid it all winter and then get hit right when the sunny days are beckoning us?). So far, Violet had it fairly easy, I had a severe case (with a few hours in the hospital for dehydration and severe abdominal pain - nothing that a little IV fluids, morphine, toradol, and zofran couldn't cure!), and now Simon has it (he's sleeping it off as I type). I am praying that Clare, Jamie, and Shawn escape unscathed, but I just don't think that's going to happen. Thankfully, it's a short stint (about 12 hours), but it's rough. I am praying that if Clare does come down with it, she can get over it quickly and without becoming dehydrated.

Tomorrow is Clare's six-month cardiology appointment. I have been so busy being sick and taking care of sick kids that the butterflies have not set in yet. I know they will be there at 8am (the time of her echo). I wonder what tomorrow will bring. The school nurse has been monitoring her blood pressure twice a week and her numbers have been slowly creeping up. Add that to the fact that at Clare's last appointment, the cardiologist talked about possibly doing a cath in the near future just to see what was going on. Her last lung scan was good, so a decision has been held off until tomorrow's appointment. I always count my blessings, and the fact that it has been 2 years, 7 months since Clare's last cath is a HUGE blessing. I never thought we would get to this point, but here we are! So those little butterflies tomorrow better be good spring butterflies!

My Guardian Angel

Shawn is usually out-of-state two days a week. On those days, it is up to me to get all four kids out the door at 7:15am to drop Jamie off at school. These mornings are typically somewhat chaotic - the only one who is consistently dressed and breakfast-fed with teeth-brushed is Jamie. The remaining four of us are usually in various stages of pajamas and I have doled out easy-to-grab morning snacks and sippy cups to tide the younger children over until we return home.

This morning was no different. I woke to my alarm and checked out the window to see what the weather looked like. We had been forewarned of a snowstorm, but no snow had come overnight. The driveway and street were clear and, equally clearly, no snow had fallen on our brown grass. I jumped into the shower and then began the wake-up-children-and-out-the-door shuffle. When I arrived at Jamie's school, I pulled up a little past the front door, which is the polite protocol at Jamie's school, so other parents can pull up behind you to drop off as well. We were running later this morning and at the school at 7:39am (they are supposed to be in by 7:40), so I was not surprised I was alone in front of the school. But I pulled up farther anyway in case another car came after me or the school bus was later as well. Jamie scrambled out of the car. I watched him go up the steep steps to the front doors, then lost sight of him as he entered the building. I rounded the corner taking my normal driving route back home.

As I neared the next intersection, though, I had an uneasy feeling. Something just crept into my mind and unsettled my stomach that something was not right. I could not pinpoint what it was, but I just didn't feel right. I have dropped Jamie off at school about twice a week for six months now, and this is the first time I have ever felt like this. As I turned right at the next set of lights to head home, I thought about driving around the block back to the front of school. I argued with myself that I was being neurotic, but I couldn't shake that "not-right" feeling. So despite feeling somewhat idiotic, I looped onto the alley-street right along Jamie's school. This street runs past the rear parking lot of the school. As I drove past, I saw that the parking lot was deserted, which is unusual. I turned in front of Jamie's school again and as I pulled in front of the building, that's when I saw him in the corner of the stairs. Not inside the building as I had thought, but tucked into a corner where I could not see him from my drop-off spot on the street, vainly ringing the school's doorbell over and over. When Jamie looked up and saw me coming out of the van, he ran down the stairs. With tears in his eyes, he said that the school was locked and no one was answering the bell. I frantically tried to figure out what I had missed. Our city was having a State Senate election that day, but I didn't remember the Monday notice saying anything about school being cancelled. Jamie's teacher's father had passed away the previous week and his funeral Mass was being held today, but I doubted the entire school would be closed for that. Another mother pulled up behind me with her two girls, but she didn't know why the school was closed either. Since there was nothing to do but go back home, I called a friend on the way home whose children also attend the school. She explained that it had been on the news that morning that most of the towns in our area had closed schools because of the impending snowstorm.

In the three years my children have been in school, never have the schools closed in case we get snow. There have been many mornings with snow on the ground where not even a delay has been called. So I did not feel silly about assuming there was school when there was no snow overnight and it was not snowing in the morning (and incidentally, it did not really start snowing until close to 2pm anyway today and didn't start to accumulate until closer to 3pm, when school would have been done, but I digress). But I still feel sick to my stomach when I think about what if I had just driven home. At drop-off, I usually see Jamie enter the building (there is always an older student on the inside who has door duty in the winter to open the door). When Jamie disappeared from my view, I assumed he had gone into the school. All I know is that our guardian angels were looking out for us today. I feel sick when I think what would Jamie have done if I truly did just leave him outside a locked building in the city? Where would he have gone? The central fire station and police department are right down the street from his school. Would a 7-year old have the wisdom to walk down there? Would he have waited on the steps in agony - scared that the door was locked and his mom had driven away - until that other mother arrived? It makes me want to throw up. I have thanked God so many times today for giving me that unease, that certainty that something wasn't right, even though I didn't know what it was. That I trusted my gut and not my brain telling me I was being stupid and turned around. That I learned an essential lesson today to be absolutely 100% positive that Jamie has walked into his school and who cares about polite protocol and pulling up to the corner and other parents being ticked off that I was parked right smack in front of the doors. I thank God that He watched over us today and kept us safe. It turned out to be a fabulous day. Not a very good beginning, but it turned out to be one of the best days we've had in a long time.

Penguin Plunge

Thank you to all who generously donated or came to witness Shawn and his dad Mike participate in the Penguin Plunge for Special Olympics. Together, they raised over $2,000! It was a chilly day (25 degrees, and that is NOT counting the wind, which there was plenty of), but no complaints from Shawn and Mike as they ran into the Atlantic Ocean. We are so proud of them and what they were able to accomplish to help thousands of kids, like our Clare. Thank you all! (Shawn is in the black shirt and Mike is wearing the sweatpants with suspenders - don't ask!! There were all kinds of creative costumes that day!)

End of the Week Daybook

Outside my window … oh my goodness, it's so cold. The snow has deceptively melted away, but winter's not done yet.

I am thinking … eventually Simon will figure out that he can get in and out of his new toddler bed by himself. In the meantime, I am enjoying the fact that he doesn't!

I am thankful for … the generous support of family, friends, and strangers who pledged in honor of Clare for the Penguin Plunge, which benefits Special Olympics. Shawn and his dad raised over $2,000 and are looking forward to taking the plunge on Sunday!

I am reading … Handle with Care by Jodi Picoult, and I am not sure if I like it. It's the story of a mother whose daughter has a rare disorder. The mother is suing her OB in a "wrongful birth" suit, claiming that if she had known ahead of time that her child would be born with this condition, she would have aborted the pregnancy. It is not difficult to read emotionally, I am just so against the premise of the lawsuit. But it is interesting.... we'll see how it turns out.

I am hoping … everyone's noses stop running already!

On my mind … special prayer intentions. I am beginning a Novena today.

We’re learning … how to spell our name. Go, Clare!! (She proudly recites it daily.)

Noticing that … people say the stupidest things. (As in, "I am blessed with three healthy kids, so I don't want to jinx myself with a fourth.")

Pondering these words … "We must hang together, else, we shall most assuredly hang separately." -- Benjamin Franklin

From the kitchen … turkey filets wrapped in bacon, baked sweet potatoes, and green beans. Shawn is coming home tonight from NYC, and I am looking forward to cooking grown-up food.

Around the house … the contractor came a couple weeks ago to look at where we want our addition. Now we are waiting for rough plans and numbers.

One of my least favorite things (a new category I am adding!) ... when my darling children refuse to nap, then act like beasts for the remainder of the day.

One of my favorite things … the smell of baking cupcakes in the house.

A picture I am sharing…





Jungle animal cupcakes for Jamie and Violet's joint family birthday party.

Plans

Even though the new school year is seven months away, registration is going on now so we are thinking ahead. We have decided to send Simon to 3-year old preschool. He has been watching Jamie and Clare go to school for two years now and asks when his turn is coming. He is one smart, outgoing kid, but in a structured setting, he turns into a statue. He has no problem leaving me (does great in the childcare room at the gym, loves playdates), but does not participate when it's something organized. So I think morning preschool twice a week will be a good start for Simon. I took Simon with me a couple weeks ago to visit the school and register (it's the same school where Jamie attended preschool and kindergarten). Now he asks me daily when he is going to school. At first, I told him when he was 3, but now he thinks he will go on his third birthday. So I have changed my answer to "after the summer." I don't think Simon has a clue what that means, but it satisfies him!

Clare will begin kindergarten next year in our local school. We don't formulate her IEP for next year until June, but kindergarten registration starts next month. I am not sure if we get to decide between morning or afternoon, but I am aiming for morning. I feel like we just finished Clare's transition from Early Intervention into preschool, and now we're going to start transitioning from preschool into kindergarten. And with that comes a whole new list of questions and decisions. Will Clare be included in a regular kindergarten classroom? If so, will she be pulled out for services? What services will she receive? Should we aim for an extended school day? Does she need an aide? If we decide to bus again, will she be on the big school bus (in which case, absolutely not!) or still on the small bus? Is Clare ready for kindergarten? Am I ready for this? So many questions and no answers yet.

Clare has been off her blood pressure medication for two months now. She had one blood pressure reading at the endocrinologist's office which was quite high, but, other than that, her pressures have been pretty good for Clare (and almost comparable to her pressures on the meds). The school nurse takes her blood pressure twice a week for us, and we follow-up with her cardiologist in March for her six-month workup (echo, EKG, etc.). I have to say I am feeling very positive about all this. At first, I hated the idea of taking Clare off her meds. She has been on beta blockers since she was seven months old, so stopping cold turkey was scary. But it seems to be going well, and it's been very freeing (for me) to be down to only three medications a day. I always get anxious right before her cardiology appointments, though, so I know the jitters will return! In the meantime, Clare is doing well.

Happy 7th Birthday, Jamie!

My baby is 7 years old today. My first baby, that is! Happy 7th Birthday, Jamie!

Everyone is still in some stage of a viral cold, so we had a low-key day. Jamie begged for a present first thing in the morning, so we gave him the magic kit we bought him. He was thrilled and spent a good majority of the morning practicing then performing tricks for us. Jamie chose to go to our favorite Mexican restaurant for his birthday celebration, so we did that, followed by ice cream cake, and more presents. Jamie is at a great age where he is so interested in how the world works. He is fascinated with outer space, so Shawn and I got him a telescope for his big present. Jamie loved it, and he and Shawn bundled up against the single digit cold to view the full moon. It was a cloudy night, so they are making plans for another star-hunting night in the (warmer) future.

Happy 1st Birthday, Violet!

Our sweet baby girl is one year old today! Even though she is Baby #4, every milestone is such an excitement in our household. We never get tired of celebrating each one. Jamie, Clare, and Simon get even more excited than Mommy and Daddy, if that's possible!

We decided that Violet wanted pancakes, grapes, and bacon for her birthday dinner. (Pancakes being her favorite food and a dinner that everyone would eat - okay, I did make a cheddar and tomato frittata for the grown-ups.) Violet eagerly dug into her pink frosted cupcake. No hesitation there. She is our most advanced one year old when it comes to gross motor skills, deciding that her birthday was the perfect day to demonstrate that she can go up the stairs. Thankfully I caught her when she was only on the third stair because she does not know how to get back down other than just leaning back and hoping someone catches her! It was so much fun watching her go crazy with all the exuberance in the room as she opened her presents. She was everywhere! Violet LOVED the baby doll that Jamie, Clare, and Simon picked out for her. Baby dolls are one of Violet's favorite toys right now - she crawls around the house carrying one a good portion of the day. This birthday present is her very first baby doll (Clare has been generously loaning hers out). My sister Christina sent an adorable dress and hat - isn't that hat precious? I have a feeling it will be a part of her one year professional photos. Violet received a walker/ride-on toy from Shawn and I, which she also loved. She is so close to walking (stands alone and has taken two steps so far). She was zooming all over the living room with her new toy. I have a feeling it will be the push she needs to walk on her own. Then it converts to a riding toy, so she can keep up with her older siblings.

It's been a crazier-than-normal week in our house. We started off with a huge snowstorm on Monday. Simon has decided this week that napping is not for him anymore. And it really was not a good week for Simon to start this because Clare has come down with the flu - this was her official diagnosis today at the pediatrician's after three days of a fever and horrible, bronchial cough. She is now on antibiotics, Tamiflu, Tylenol, and nebulizer treatments. Jamie has had two migraines, and Shawn was in Philadelphia for two days. And, of course, while Shawn was in Philly, we were blanketed with more snow, so I had my once-a-year crash course in running the snowblower. After all that, to have my baby girl turn one and have a fun little birthday party this evening was such a bright spot in an otherwise not-so-good week!

Happy Birthday, Violet Grace! We love you so much! You are a ray of sunshine in our lives!

Taking the Plunge

S~ Close to five year ago I became the father to a Special needs child. At that time, I will be honest, many things went through my head. Was I ready for this? Is this something I am strong enough to handle? And I have to admit some disappointment. Disappointment in the fact that I would probably never get the chance to walk her down the aisle on her wedding day or see her off to her first prom. These are all selfish thoughts I admit, but nonetheless these were my true feelings. Looking back over the five years, a lot of those fears and concerns are still lingering, however they are minimized by all the pleasure that a special needs child can bring. On my worst days, it is usually Clare, climbing into my lap with her big starburst eyes and a smile on her face telling me I am her hero, or I am her best friend. Those moments are priceless and will elevate any sour mood. So my goal with Clare is to now give her the richest and fullest life I can. It is hard to watch other kids her age pass her by, some losing interest in playing with her because she can't keep up physically or mentally. And you worry that she will grow up with very little friends and confidants. That is why when we found the Youth Athletic Program with the Special Olympics, I knew that here is a place where Clare could be herself, and be surrounded by other kids dealing with the same problems. So that is why I have chosen, and will be accompanied by one of my greatest friends and supporters, my Dad, to support Clare by raising money for the Special Olympics. My dad and I have decided to take the plunge, the Penguin Plunge that is! That's right on February 7th my Dad and I will be plunging into the Atlantic Ocean no matter the weather or temperature. However, we can only do it if we collectively raise $600.00. That is why I am asking for your support, no matter how much you can contribute. Please help me and my Dad support a program that has meant so much to Clare! Thanks!

You can click on the link or the sidebar to the right to donate online with a credit card. If you want to make a cash/check donation, you know where we are!

Taking the Plunge for Clare

Neglected Daybook

Outside my window … darkness. Which means the Christmas lights have been taken down and Christmas is officially over.

I am thinking … I need to stop feeling guilty over every little thing.

I am thankful for … our beautifully-finished office. To celebrate, I completed Simon's first year scrapbook today.

I am reading … An Echo in the Bone by Diana Gabaldon. Finally!

I am hoping … I can keep this blog up. I think it's days are numbered.

On my mind … I cannot believe Violet is turning one next week. :(

We’re learning … that those meddling kids do always solve the mystery.

Noticing that … all the kids are growing like weeds. Except for Simon. Hmmmm... is he just going to be short or is there something else going on?

Pondering these words … "Ok - too many different words coming at me from too many different sentences." --Michael Scott

From the kitchen … getting out of my recovering-from-surgery-and-then-baking-for-the-holidays fog. I have actually been making dinner - barbecue pulled pork, chicken pad thai, enchiladas. And the kids hate it all.

Around the house … birthdays, birthdays, birthdays.

One of my favorite things … coming home after a long day to dinner already cooking, the table set, and wine poured. (Okay, no wine poured, but it sounded nice.)

A picture I am sharing … The sweetness of stolen candy canes.

"Monday Monday" Daybook

Outside my window … snow, snow, snow. Winter has finally come to stay in New Hampshire.

I am thinking … that Thomas the Train is the dumbest show. Why does Clare like it so much?

I am thankful for … car insurance and that the driver who hit my car last week actually had some. I am sorry I doubted him.

I am reading … City of Bones by Cassandra Clare. (And still finishing the other two books - now I have a downstairs book, upstairs book, and rocking chair/nursing book - such a geek.)

I am hoping … (selfishly) that Shawn chooses to drive three hours home from Connecticut tomorrow to drive three hours back the next day.

On my mind … whether or not it is vanity that I want to have my Lasix surgery touched up. Ten years post-surgery, I really need to wear my glasses full-time again, but I really don't want to. I sound like a little kid. I don't wanna! I don't wanna!

We’re learning … lines for the school play. Jamie has a small speaking role in The Emperor's New Clothes. Maybe one day Shawn and I will be able to get back into theatre.

Noticing that … I really need a Kitchen Aid Mixer.

Pondering these words … "The winding roads shall be made straight, and the rough ways made smooth." --Luke 3: 5

From the kitchen … Christmas cookies. We've already baked galettes, sugar cookies, and Russian teacake surprise cookies. Peanut butter cookies are next. All cookies from my childhood, so I am awash in memories of Christmases at my parents' in Rhode Island and Granny's in West Virginia.

Around the house … Violet is cruising everywhere now. Nothing is safe, and she has realized that if she stands on her tiptoes, she can reach even more stuff!

One of my favorite things … my laptop. It's great to be portable!

A picture I am sharing …

Simon and Clare challenge each other, cheer for each other, and love and hate like the best of siblings!

Blood Pressure Check

Shawn took Clare to the cardiologist this morning for a quick visit, blood pressure check, and EKG. Her EKG was normal and her blood pressure was 102/60, so that's all good. We have not noticed any change in her mood swings or sleeping habits, so we're going to continue Clare off her BP medication for another month and do another check then.

Thursday (Night) Daybook

Outside my window … our neighbors' Christmas lights across the street. They did a beautiful job, and it thrills the kids every night to look at them.

I am thinking … how funny is The Office! Love it!!

I am thankful for … the unseasonably warm weather today. We had a chance to play outside and go for a puddle and worm walk.

I am reading … At Some Disputed Barricade (still) but added The Shack by William P. Young (a recommendation from Kerry, which Shawn highly enjoyed).

I am hoping … that this does not turn into a winter of illness. Just when everyone was finally healthy, now Violet ran a 102-104 fever all day.

On my mind … what should I eat for a snack?

We’re learning … about the salvation story and how to prepare for Christmas in our hearts.

Noticing that … it's time for a trim.

Pondering these words … "A person's a person, no matter how small." --Dr. Seuss

From the kitchen … gearing up for Christmas baking. Today I made a Banana-Pecan Coffee Cake. A new recipe for me - two thumbs up!

Around the house … we traditionally decorate for Christmas on the First Sunday of Advent, so we have enjoyed our tree, Advent wreath, and Nativity this week. Now we need to work on our village.

One of my favorite things … when I am nursing Violet, and Clare snuggles up with us. She rubs Violet's head and says, "Hey there, little fella." (Where does she come up with this stuff?)

A picture I am sharing ...



I was scrapping photos from last summer and found this one! In so many ways, Clare is such a girly-Princess-girl. And then she's not...

Cardiology Callback

Clare's cardiologist called this morning to talk about yesterday. He was concerned both about Clare's complaint of left arm pain and her moodiness and change in sleep habits. He is treating them as two separate issues, even though he acknowledges the fact that Clare's complaint of pain could be a call for attention stemming from the mood swings. However, children with Williams syndrome can have pulmonary and/or coronary artery problems that present suddenly, and some of Clare's complaints match symptoms of a greater issue. (And, of course, she does have severe pulmonary stenosis, which was clinically stable as of two months ago.) Again, the cardiologist stressed that he does not believe Clare is having any vascular problems since she has had great echo and EKG results over the past two years, but he never takes any chances due to the nature of Williams syndrome.

The cardiologist also said that mood swings can be a side effect of taking beta blockers, but her former medication has a higher incidence of this side effect than her current medication does. So the chances are that she would have experienced this side effect on her other medication. However, she is on a higher dose now and, everyone is different, so we are going to trial her off her blood pressure medication for one week. If her mood swings improve and her blood pressure is good, we can continue trialing her off the medication for longer. If her mood swings improve, but her blood pressure is high, then she will have to go on something different. If her mood does not improve, then it's not the medication responsible for her mood swings, and he wants her back on the blood pressure medication, regardless of what her blood pressure reading is. (He would rather keep her on a beta blocker right now.)

So.... in a nutshell, we will see how Clare fares this week and go in next week for an EKG and blood pressure check. If there is something funny going on, the EKG should pick up an abnormality. I am so glad that our cardiologist is on top of this stuff! Sometimes I just want someone to tell me what to do so I can stop second guessing everything I do!

Anxiety Over Anxiety

Anxiety is common in Williams syndrome, but we have not really seen it in Clare. Until today. She definitely has her intense dislikes - fire trucks, fire drills, lullabies, soft Christmas carols - but it comes, she cries, they go away, she stops crying. Occasionally, if we're in the doctor's office or some place like that where she sees the fire alarm light on the wall, she'll ask if there will be a fire drill, and we will reassure her that there won't. But she doesn't obsess about it. She can move on.

I am not a psychotherapist, but it seemed like Clare became fixated on two events, and they kind of merged in her mind. At the end of school yesterday, one of her teachers jokingly asked Clare if she would miss her (meaning until school tomorrow). For some reason, this made Clare sad, and in her mind, she became scared. Then when she comes home, and we get ready for the end of the day and dinner, the reality sinks in that Shawn is away on business (the kids are used to having only me at home during the day, but at night, everyone misses Daddy even more!). So today, Clare cried on and off. She missed Daddy, her left arm hurt, her stomach hurt, her head hurt, her teacher scared her. It went on and on. She was getting to a point where she couldn't function. She couldn't eat breakfast, she couldn't walk upstairs, she wanted to just lay on the floor. I really didn't think she was sick, but she was acting so weird. Her anxiety was manifesting itself physically.

I had no idea what was going on and have never dealt with this kind of anxiety before. I made calls into the cardiologist and the preschool (covering all bases!), then tucked Clare, Simon, and myself into my bed for some PBS viewing. To bring this to the point - her preschool teacher confirmed that nothing had happened at school other than that one innocent joking comment. The cardiology nurse and I talked about her blood pressure med and side effects, so I am still waiting for the cardiologist to call back. And after an hour of vegging out, Clare was back to her normal sunny self and the rest of the day was great.

I've heard the stories of anxiety and Williams syndrome, medications, coping techniques, etc., but always kind of thought Clare wouldn't be like that. And maybe she won't, but maybe she will. I hope that this incident was just a freak thing and not a problem with her blood pressure medication or a preview of things to come. I know we will deal with whatever comes our way, just as we have for the last four plus years. I can still wish it all away!

Rainy Friday Daybook

Outside my window … pouring rain. I knew this unseasonably-warm, sunny weather would change. It reminds me that I need to enjoy each moment because life, like the weather, can change so quickly.

I am thinking … that I am finally tired of eating Halloween candy. I am in the mood for baking today.

I am thankful for … modern medicine and that my croupy baby slept a little better last night thanks to some oral steroids.

I am reading … At Some Disputed Barricade by Anne Perry (one of my absolute favorite authors and a book I have had for almost a year now waiting to be read).

I am hoping … that Russell on Survivor actually wins the whole thing. I was anti-Russell in the beginning, but I have to admire that guy now - one of the best players in Survivor history.

On my mind … that Advent is fast-approaching. Shawn and I agree that we want a peaceful, joyful Advent season. No frenetic shopping, running around, or other general chaos.

We’re learning … subtraction patterns (Jamie), how to write our name (Clare), counting past 25 (Simon), and pulling up and cruising (Violet).

Noticing that … my house is getting neater and neater every day!

Pondering these words … "If God can work through me, He can work through anyone." --St. Francis of Assisi

From the kitchen … as I said, I am in the mood for baking. I am thinking banana bread and pumpkin muffins today.

Around the house … we're clearing out space for furniture. My dad is bringing us my old childhood bedroom furniture next weekend. It will eventually be in the girls' room, but we need some space for it!

One of my favorite things … my Keurig.

A picture I am sharing …

Jamie in action in the classroom. He is so handsome in his uniform!

A Daybook

I read about this idea on a blog I follow and loved it. I love having my Clare's Journey blog, but I don't have the time anymore to be as faithful as I used to be. (Geez, why would that be?) So this is an easy way for me to stay connected and keep on recording moments of our life as it whirls around us. I am going to try to do this at least once a week.

Outside my window … it's a gorgeous, sunny, crisp November day. I have not set foot outside this house for an entire week now due to recovering from my kidney surgery. I am looking forward to joining my sister Christina (who with her baby Casey has been helping out around here for a few days) on the afternoon school pick-up rounds.

I am thinking … how blessed I am to have this incredible support system around me who love me, Shawn, and our children so much that they will drop their lives for a couple days to pick up ours.

I am thankful for … a hard-working, family-devoted husband who got up at the crack of dawn this morning to fly to Philadelphia for the day, but arranged his flights so he would be home in time to put the kids to bed.

I am reading … The Virgin Queen's Daughter by Ella March Chase. I love my historical fiction (especially of the Tudor period).

I am hoping … there is some way I can finish my Christmas shopping before Thanksgiving. Nine days left.

On my mind … all those children with Williams syndrome who are currently fighting for their lives.

We’re learning … that the family can survive without Mommy being on her toes for a while, although it does put a crimp in the laundry schedule.

Noticing that … I will never be a bikini model. Unless it's Frankenstein's bikini model. Why did they have to put one of my incisions right through my belly button?

Pondering these words … “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” — Blessed Mother Teresa

From the kitchen … my deep freezer is stocked with all sorts of delectable dishes to get us through the next couple of weeks without having to cook.

Around the house … oh my goodness, it is a mess! But I am so grateful for Shawn, Diane, Leslie, and Christina who have kept it together for me!

One of my favorite things … listening to Clare and Simon play quietly downstairs, their imaginations running wild.



A picture I am sharing …


Those bright blue eyes, those cheeks, she is so lovable!

Good Medical News All Around

* We were finally able to get Clare vaccinated against H1N1.

* We potentially have already had H1N1 in our house, and everyone survived with a lot of sleep and a lot of Tylenol. ("Potentially" because no one was tested, so it's not definite, which is why we went ahead and still had Clare receive the vaccination.) Jamie got the brunt of it with almost every symptom and was out for four days. Simon, Clare, and Violet had fevers, sore throats, and general crankiness and fatigue for about two days.

* We received the results of Clare's lung scan, which showed lung output at 45-55. Almost perfect and better than her scan 18 months ago! Which means she is not headed into the cath lab anytime soon and will follow-up with the cardiologist with another echocardiogram and EKG in six months.

Blast From the Past

I found this old photo of my little sister Christina and I from one of our All Saints parties as kids. I have no idea who we are supposed to be (maybe Mom can help?), but I am pretty sure whichever saint I was did not really have those lovely dangly earrings and humongous glasses, however stylish they may be!

A Prayer For All

The kids received a new prayer book that has a prayer for just about anything you can think of. We chose one for cousins tonight since they are seeing all their cousins this weekend, and they are so excited for Jasmine, Alex, and Casey to come to our house. I should have scanned the prayer before reading it:

"Dear God, we like our cousins.
When they come to stay,
We talk and laugh and run and jump
And play.

Then we have an argument,
We shout and yell and fight.
We want them to go home again
That night.

But when they're gone we're sorry,
Although they are a pain,
We miss them and we cannot wait till they come
Back again!"


What kind of prayer is that?!? Is it wrong to throw a book of prayers away??

Insomnia

It's one of those nights that even though I've been going all day, I still can't seem to fall asleep. Maybe a blog post will wipe me out...

We missed fall this year. Some rain, a few nice days, and now the temperatures are freezing. I sent both Jamie and Clare to school in their windbreakers with sweatshirts underneath in 40 degree weather because I hadn't hauled their winter jackets out of storage yet. Then we had snow yesterday. It didn't stick, but snow a couple weeks before Halloween is not allowed! Plus Shawn was away on business for three weeks. So we've been cramming in our outdoor fall decorating (hay bales and mums), pumpkin picking and carving, and putting together Halloween and All Saints Day costumes into a few short days instead of stretching it out over the month. Although Shawn missed out, my mom and I did take the kids apple picking with friends. They had a blast (even though it was freezing - apple picking in winter hats and gloves?!?). The orchard had every variety of apple you could think of, a play area for the kids, balloon man, and a wagon ride. With our friends, we had a total of nine children who naturally commandeered the wagon ride. They sang songs all the way out to the orchards and were pretty darn cute! So at least I've been able to do a little of my fall baking and cooking. Today was homemade applesauce. It was amazingly simple and delicious! Tomorrow I am aiming for pumpkin bread and apple gingerbread. I don't know what I love more - baking it or eating it.

Clare has her lung scan this week. Our local hospital agreed to do it unsedated, so that saves us a trip to Boston. Clare needs an IV in place to undergo the scan, though, so the hospital wants us to report to pediatrics 90 minutes before the scan for the IV placement. I hope they are just being ultra-conservative and don't want to chance being late for Nuclear Medicine. I really hate to think that it's going to take an hour and a half to insert the IV. Since it is looking like this is going to be at least a 2-3 hour appointment now, Shawn is going to take Clare alone. I can't remember if the lung scan results are immediate or not. My bet is that we will have to wait for the cardiologist to give us the news. Whether Clare goes into the cath lab or not rides on this scan.

I posted a long time ago about me personally having some kidney issues. I am not a fan of talking about myself, but I am undergoing kidney surgery next month. I am a tad nervous about the general anesthesia (only had an epidural with my emergency C-section with Violet) and the surgery and recovery itself (I have been told it will not be as bad as my C-section recovery, though). I am super nervous about Life At Home Without Mommy for 2+ Days, especially for Violet. I have been pumping and storing milk since I found out about the surgery, but finding the time to pump with four young children while almost exclusively nursing a 9-month old does not equal gallons of milk in my freezer. I know we will all survive my hospital stay (which will at least be two days if all goes well), but I still get a pit in my stomach thinking about it.

And if I don't go to bed, the kids will be greeted by Zombie Mommy in the morning...

Cheeks

I love that this baby is all cheeks!

Cardiology Report

Clare had her six-month cardiology work-up on Monday. What a long afternoon! How did I do this monthly or even weekly??? It wiped me out for the week.

Good news and okay news. It could have been worse! This was her first official visit with her new cardiologist. He has been part of our practice since Clare was born, and I have spoken to him a few times on the phone, but we had only met one other time in person. He was the cardiologist, however, who referred us to Boston to have Clare's fistula repaired, so I was already giving him two thumbs up. After this visit, I am even more impressed. He is so thorough, and it's a breath of fresh air to have a new perspective on Clare. Not that we were ever unhappy with her old cardiologist (who moved away), but I was wary of the new change in doctors and am very pleased with the outcome so far. My only negative was that he wanted to talk more than I did - and that's only because I was done after almost three hours at the doctor's office with three kids, ages 4, 2, and 8 months.

Good news comes first - according to the echo, Clare's heart has not changed that much in the last six months. Although her stenosis has not improved, the vessels are all still small, and she has a leaky aortic valve, this has not changed for two years, which is considered good. He also listened to Clare's left radial artery where her fistula was, and it sounded normal. There is no palpable lump anymore, so the glue has most likely been reabsorbed as well.

The okay news is that since it has been two years since Clare had a cardiac catheterization, the doctor is toying with the idea of sending her back into the cath lab. He does not want her to get to a crisis point before something is done. He would rather have her undergo a cath so they can get a more accurate picture of how she's doing and do some dilations if necessary. Before this happens, though, he is going to send Clare to have a lung scan done. She can do this at our local hospital if they will do it unsedated (which they would not do 18 months ago when she had her last lung scan, and we refuse to have Clare undergo the risks of sedation just for a scan). If the local hospital won't do it, she can have it done in Boston. The lung scan will show if her lungs are working fairly equal, which provides a good indication of how her pulmonary vessels are doing. At her last scan, she was 57-43, which is pretty good for Clare. If the lung scan shows positive results, we will follow up for another echo and visit with the cardiologist in six months and re-discuss a cath then. If the scan is not good, Clare will most likely have a cath sooner.

The other okay news is that Clare's blood pressure was a little on the high side in all four extremities. Upon reviewing her list of medications, the cardiologist informed me that she was on a "baby" dose of blood pressure medication for her weight and age. I cannot remember the last time her dose was increased. He asked me what I thought of switching Clare off the liquid med and onto a pill - a medication that would be more appropriate for her age and a higher dose. A pill that she can take once a day in the morning? A pill that means I no longer have to sneak in late at night and give her one final dose of medicine before I go to bed (or on those nights I want to conk out earlier, I have to set my alarm clock to give her the dose)? A pill that means I no longer have to pack a syringe of medication whenever we go anywhere in the afternoon (even if that's just to pick Clare up from school)? Oh my goodness - give us those pills!!! Clare has been swallowing a pill for a long time now with her thyroid medication, so she will be all set with this one. The cardiologist did caution to start the new medication on the weekend when she will be with me all day, in case the higher dose causes any adverse effects. So we are going to start on Sunday. (I would start on Saturday, but I don't want to interfere with her new Special Olympics group - more on that later!)