Thursday, December 25, 2008

Merry Christmas!

Merry Christmas from our house to yours!

Tuesday, December 23, 2008


This is what happens when it snows for three days straight. (Mind you, we had NO snow on the ground prior to this storm.) And it was a pleasant five degrees out this morning. I don't know if I'm ready for winter, but the kids are! (And, yes, that is Shawn careening down our yard on the sled!)

Sunday, December 21, 2008

Gearing Up for Everything

I am supposed to be paying bills online, but got sidetracked! I cannot believe there is only five weeks left until my due date. I keep complaining about how this pregnancy is lasting forever, but I know it's just because I am ready to get my energy back, not to mention say good-bye to heartburn, sciatica, pregnancy migraines, anemia, and feeling like I have to vomit every time I bend over. Being pregnant the fourth time around has been so much harder, I think due to the fact that in my last pregnancy, Clare was not mobile at all and Jamie was at an age where he was very independent and not getting into everything. Jamie is still independent and trustworthy, but now I have two monkeys who are into everything in our house. I am very happy to be pregnant again (because I cannot wait to meet our end result!), but I will honestly be so glad when it's over! Right now, I am weeding through my iTunes library as I work on the computer (always multi-tasking!) to put together a playlist for labor. I am aiming to go all natural again, and music was a big focal point for me.

It's been a crazy two weeks around here. Early, early last Friday morning (more than a week ago), NH and a good portion of New England was hit with a huge ice storm. We, and a quarter of a million other people in our state, lost power. Thankfully, we were one of the lucky ones and only lost power for 19 hours. We know many people who lost power for 6-9 days. So we only had to endure one day of living in a chilly house. However, our pumping station for our sewage system lost power as well. That was not restored for 8 days, so we were once again without drainage for over a week. Which means almost no running water. Which in turn means trips to the laundromat, showering at the YMCA, mellow yellow toilet bowls (what fun!), and lots of take-out. Since people across the state lost power, the schools have been closed since that Friday. So the kids are going to have more than a three-week Christmas break! Lucky them - kind of driving mom crazy. The power crisis is past, though, and we're staying cozy and warm through a three-day non-stop snowstorm now. Gotta love winter in New England!

Time for some good ole photos of the beautiful kiddos...

Saturday, December 20, 2008


Yes, it will make you cry, but it is also so beautiful to read how much a family cherished their young daughter, and I am in awe of the strength and courage this mother possesses. After countless hospital stays, surgeries, and codes, Natasha passed away on December 17. This is the letter her mother wrote to family and friends:

"Dear Family and Friends;
This is an email we hoped we'd never have to send.

Natasha Marie passed away peacefully last night. As usual in her gentle but firm way she made the decision to go home. Her condition became too unstable to transport her to the operating room let alone perform a surgery that would have put her in a lot of pain with no chances for reversing the damages to her kidney and liver.

We were able to hold her in our arms for a long time and tell her how much we loved her, and how grateful we were for her love and the many ways she constantly demonstrated it to us in her laugh, and in her smile, her clapping her hands in joy when we entered her room, and patting her chest each time [her dad] entered the room to indicate she was his princess.

Now her job is to sit in Our Lord's lap and beg him to bring all her family into heaven - us and all of you who have been praying so faithfully for her. I'm sure she is joining all the preparations that must go on in heaven to celebrate Christ's birth. The name Natasha means Child of Christmas. She chose to go home the day the Church starts using the special antiphons eight days before Christmas, probably to help with the preparations.

She will a saint in heaven, skipping and dancing around free of all the encumbrances that limited her physically. While we had been constantly praying for a miracle for Natasha we always asked for one only if it was God's will. God gave Natasha an unusually tough yet most gentle, accepting, and loving temperament that enabled her to bounce back repeatedly with a ready smile after enduring a procedure that would have made most adults cringe. He also gave us many smaller miracles to ensure we had time to get to enjoy her beautiful presence and personality before He took her into His all loving presence. For this we remain eternally grateful. We also remain always in the debt of all of you who loved her and faithfully prayed for her. We could not have done this without you. Now, remember that all of you have a saint in heaven praying you get there so she can thank you in person."

I say a prayer tonight for this family and for all those who are suffering, either physically or emotionally, as Christmas draws closer.

Saturday, December 13, 2008


It's been a while since I've written what I think of as my "Williams syndrome" posts, but tonight Shawn and I had one of those WS moments.

One of my friend's daughters had her four-year old birthday party tonight at a bounce facility - the kind of place with huge slides, bounce houses, obstacle courses, anything that can be filled with air! Our children were very excited. Jamie and Clare talked about the upcoming party all day, and even Simon wandered around the house saying, "Happy Birthday" (or his version of it!). Once we arrived, Jamie dove right in, and we barely saw him the rest of the evening. Simon needed more supervision, but even he was having fun exploring the bounce houses and discovered he loved walking on the cushions of air and collapsing everywhere. Clare, however, was a different story. She cautiously went into one of the houses (with our help), but almost immediately was overwhelmed by the kids, the bouncing, and the fact that she could not keep her balance (very hard for her to do on unstable ground with her low muscle tone). She wanted out. There was no crying or tantrums, but she ended up just walking around the room watching everyone else. At the other children playing and running and bouncing, red faces and flying limbs from having the time of their lives. Shawn commented to me in passing how hard this was to watch Clare in these situations. I wanted to sit in the middle of the floor and cry, but since I really didn't want to do that in the midst of relative strangers, I kept reminding him (and myself) that Clare was having fun in her own way.

The evening did go better. Eventually Clare became more confident and would enter a bounce house if the kids weren't too crazy or there were only a couple of other children in there. She did fall on her back and laugh and try to stand up, grinning from ear to ear. We brought her favorite cream cheese "sandwich" and milk (while the other kids had pizza and juice boxes), and she loved sitting on the picnic table benches with the other kids (she is starting to insist more frequently on sitting in a regular chair instead of her booster seat). She tried her cake (and left quite a nice portion for Mommy to finish!) and had fun watching the birthday girl open her presents. Every time a new wrapped present appeared, Clare would ask me, "What is it?" and eagerly wait to see what was unopened. I don't know if Clare realizes yet how she is different from other children. But I do, and it hurts.

The most interesting moment of the entire evening was when a little boy from the birthday girl's class arrived. My friend's daughter is one of the "typical" children in a side-by-side classroom with children with special needs. I am pretty sure this boy had Down syndrome. Clare instantly gravitated to him. She kept telling him, "come on," gesturing to the bounce house that she finally found herself comfortable in. The boy and his mom went into the bounce house with Clare, and she had a great time playing with them. This other mom was terrific, including Clare in their play. I wish I could have gone in there with them, but the big baby belly made that almost impossible (I can barely walk on solid ground these days!). And Shawn had his hands full following whirlwind Simon around. I was so glad to see Clare having fun, but at the same time, it still gives me such an ache to see that no one else wanted or attempted to play with Clare, except this other little boy that Clare approached. It made me wonder if that other mom felt the same way I did. But, like me, she had a huge smile on her face and was concentrating on making sure her little boy had a grand time.

I try to be brave and stay positive. Shawn brought it up again in the car on the way home, and I just kept saying that the main thing was that Clare had fun. Maybe she didn't have fun in the same way as the other kids did, but she did have fun. I know life is going to be like that over and over for Clare. She will not always be able to experience things the same way as other children. But I hope that the way she does experience her life is every bit as rewarding and wonderful. I hope she doesn't have the moments that I have sitting alone and crying because of the way she is different. We all love Clare so much, but it is not always easy to be her mommy.

Wednesday, December 03, 2008

Out of the Mouths of Babes

Clare's new favorite phrase is: "Leave me alone!" When I remind her that that is not nice and we talk nice to each other in our house, she responds, "Leave me alone, PLEASE!"

I wish I could scream the same thing sometimes!!! Oh, to be young again!

Saturday, November 29, 2008

Show Time

You can tell a lot about a person and their current state of mind and interests by what's in their DVR list.

Teresa: A Baby Story
Deliver Me
The Baby Diaries
Babies: Special Delivery

Clare: Dora the Explorer
Mickey Mouse Clubhouse
Blues Clues
Little Einsteins

Jamie: Fantastic Four
Power Rangers Jungle Fury

Shawn: Survivorman

Tuesday, November 25, 2008

Sights Unseen

Thing I never thought I would see:

1 - Clare polishing off a huge bowl of macaroni and cheese at Friday's tonight before anyone else was finished eating.
2 - Simon dipping french fries into my Coke and eating them while I sat and smiled at him.
3 - My feet (well, I haven't seen them yet - two more months!).
4 - Jamie eating cooked carrots and actually admitting that he liked them and asking for more.
5 - One pregnant mama, one silly daddy, and three crazy kids dancing to Queen in the bedroom.
6 - Our kitchen completely painted. (Thank you, honey!)

All in all, a good day!

Saturday, November 15, 2008


I am not a big fan of photos of myself and am even less a fan of posting them! But I saw this shot and said - Wow, what an amazing backdrop. And then - Wow, what a baby belly!

18 Months

Don't you just want to eat him up??

Friday, November 14, 2008

The Wrench

I had a phone conversation with Clare's cardiologist today regarding the possibility of Clare having a frenulectomy (learning my lingo!). The good news is that the doctor believes Clare is clinically stable enough to undergo the necessary general anesthesia and procedure (which in itself takes minutes), and she has given us the go-ahead to have the surgery done. However, the cardiologist does not want Clare to have the surgery done at our local hospital. Given her cardiac history, Clare needs to go to either Boston Children's Hospital or Dartmouth-Hitchcock Medical Center (both about an hour away), because those are the two closest facilities with pediatric cardiologists and an operating room ready and available if needed. I am more than happy with that decision because that is what makes Shawn and I feel the safest as well - to have Clare under the care of people who deal with these types of children on a daily basis. The wrench is that Clare's ENT does not perform surgeries at either of those places. So now we have a referral with a pediatric otolaryngologist at Children's Hospital at Dartmouth. It's starting the process over again! The earliest we could get Clare an appointment was on December 30, so we're hanging out until then! And, once again, I will find myself hugely pregnant (and then with a newborn) as we prepare Clare and ourselves for another procedure. At least this time, it's not as urgent a surgery, and we cannot wait to see some positive results in her speech and eating.

Tuesday, November 04, 2008


Clare is moderately tongue-tied, and it has been a subject that comes up now and again. Lately, her new speech therapist has asked about the possibility of Clare having her tongue released. Clare is showing progress in her speech, but mainly when it comes to sentence structure (such as adding verbs into her vocabulary and forming complete sentences rather than 2-year old two-word commands). She has not really come too far with her strengthening or articulation, and the therapist feels much of this is due to her limited range of motion in her tongue. This week at therapy, Clare demonstrated that her oral abilities were too weak to even bite into a Ting (a natural cheesy doodle thingy), and we know she has trouble with chewing, biting, and generally eating anything that she cannot swallow immediately or soften in her mouth a little bit.

We last saw the ENT regarding Clare's tongue-tie when she was only months old. At that time, he suggested having it released. However, Clare was unable to have the procedure done while already under anesthesia for a cath since she is on blood thinners during her caths. And her cardiologist did not feel comfortable clearing Clare for a separate procedure under general anesthesia unless it was a life or death situation. Fast forward three years, and we are seriously exploring the option again. Clare has been clinically stable heart-wise for over a year now. She is older, stronger, and has tolerated general anesthesia many times in the past. She would most likely be able to go off her blood thinners for a couple days without any lasting harm to her heart. (This is all my hypothesizing right now!) So now I am in the waiting game to hear back from the cardiologist about the procedure and scheduling appointments with the ENT to receive more details on what the procedure entails.

While we wait, it is very cute to hear Clare remember about completing her consonants at the end of words... such as drawing out the "S" sound in "yes." She sounds like a snake - "yessssssssssssssssssss."

Friday, October 31, 2008


Halloween! Choosing a costume was so tough for Jamie this year. At first, he wanted to be a knight. Clare was dead set on being a princess (she had decided this a while ago and told anyone who asked that she was going to be a princess for Halloween), so we thought it would be cute if Jamie was a knight, Clare a princess, and Simon a dragon. However, getting Simon to actually wear a dragon costume was another story. And then Jamie changed his mind every week what he wanted to be. We finally told him that he had to choose something he either owned, we could make, or borrow. So what he did do? He picked two costumes! One we made and one we borrowed. (We do two trick-or-treats - our city does one the Sunday afternoon before Halloween, then we head to friends in another town on Halloween night.)

Our local trick-or-treat - today Jamie decided to be Handy Manny and Clare stuck firm with a princess.

Halloween night - Princess Clare, Space Shuttle Commander Jamie, and Conductor Simon (normal clothes and no big animal head - just what Simon ordered!)

And, finally, All Saints Day. Jamie chose to be St. Joseph, Simon was St. Pio (complete with the stigmata in his hands, which he was fascinated by - don't worry, just red marker!), and, once again, Clare refused to be anything but a princess. This time, St. Margaret of Scotland (who was queen of Scotland in the 11th century).

Monday, October 20, 2008


A tribute to my sisters...

Not to be outdone by her big brother...

Even Simon needed a turn...

Wednesday, October 08, 2008

Babies, Babies, Babies

I love this time in my life when I and all my friends are having babies. It's so wonderful! In my Bible study, four of the six of us are pregnant and due within weeks of each other. I have two other pregnant friends, and my sister Christina just found out yesterday that she is having a girl! I am so excited that her baby and my baby will be girl cousins only a month apart! Now if Christina and Tee Jay would only move closer....
Okay, there's my gushing baby rant for the month.

Wednesday, October 01, 2008

Tuesday, September 23, 2008


Slowly but surely I think some progress is being made in our house. Our basement is clean, mold-free, and empty. The new flooring was delivered this morning, and the guys return tomorrow to begin installation. They are scheduled to be done by Friday, so we can start moving some stuff out of our dining room and back downstairs. Shawn is then going to repair the walls himself. That may take some time due to busy schedules, but at least the basement will be livable again (which is important since that is where the kids' playroom was!). Shawn is actually at a neighborhood meeting right now to discuss what is happening in regard to FEMA, any funds being allocated to our neighborhood, etc. We're hoping for some good news!

Jamie - Kindergarten is going so well. It is exciting to see him learning how to read and spell words. It was a little bit of a rough adjustment the last couple of weeks at school (I think partly due to the commotion in our own house). He is getting used to less play and more work and now claims he loves kindergarten more than preschool because of the "fun stuff" they are learning. Swim class and soccer are going well, and he scored his first goal this past weekend! That was certainly wonderful, but we are so proud of what a good teammate he is. And the sideline parents never cease to amaze me. One dad at the last game actually said to his son after his son scored a goal, "You got lucky." These children are 4 and 5 years old! Unbelievable!

Clare - We found a fabulous new speech therapist for Clare. (Thank you a million times, R, for the recommendation!!!!) This woman is the creme de la creme in the state of NH and beyond - she is the speech, feeding, and swallow guru. She just carved a couple hours out of her demanding schedule to see more patients in office and thanks to our quick referral by a friend, we were able to get on her weekly schedule. Clare had her evaluation this past Monday, and I, for one, am in love! First, I am impressed with any provider who took the time and effort to coordinate an hour that was convenient for me. For me, not for her! An hour which fits perfectly into our running-around schedule between morning preschool and afternoon kindergarten. Clare connected with her instantly, and even Simon was entranced. The therapist said that Clare was very weak in her facial and oral muscles, which accounted for much of her feeding difficulties and preferences, as well as her speech impediments. She also thinks that Clare's tongue-tie (which has never been clipped due to the issues Clare has with anesthesia, bleeding, etc.) could be playing a role in Clare's hard-to-understand speech. She is going to work with Clare not only on speech but feeding as well on a weekly basis. I am very excited to see where this all goes.

Clare also had the dreaded DENTIST appointment last week, and it was horrible! (Yes, it deserves capital letters, it was so bad.) She has gone with us many times to see the family dentist in action and watched Jamie get his teeth cleaned the week before. However, when it was her turn, she refused to sit in the chair. When I finally coaxed her on the chair by sitting on my lap, she lasted for one second until the hygienist came near her, then turned into a wild animal. She was screaming, biting me, kicking, frothing at the mouth (literally because she forgets to swallow her saliva when quite upset). The dentist had gone home on a family emergency, so I called it quits with the hygienist, and we made an appointment for this week with the local pediatric dentist. Clare's appointment is tomorrow (and I am wimping out and asked Shawn to take her). We have heard great things from this dentist (who specializes in special needs children and used to be at Children's Hospital Boston), so I am expecting miracles here! Tomorrow we also have a home visit from Clare's preschool teacher in the morning. Not really sure what that is going to be all about, but I am thrilled to show her our crazy post-flood house!

Simon - My sweet almost-17 month old boy finally started walking! Who knew that Jamie, at 15 1/2 months, would be my early walker! I guess my kids are just slow when it comes to getting around. Simon started taking a few steps a couple weeks ago and last week, he took off. Now he very rarely crawls and tries to walk everywhere. He is pretty steady inside and is working on his outside skills. He loves to walk holding onto something now (such as a toy or a humongous sword which is taller than he is). Simon is so proud of his new skill and receives lots of cheers from his parents and siblings!

And, last but not last, Baby Girl in Utero who is almost named - We had another ultrasound on Monday since our ultrasound three weeks ago did not result in great views of her heart. However, she was again not in a great position (chin tucked on her chest with her legs wrapped over her head, so her heart was almost completely blocked from view). The tech did the best she could to get the baby to change positions, but no luck there. I did get to see a 3D image of her (I have never experienced that before) which was amazing. However, this tech, as well as the previous tech, was not very friendly about the fact that we had our other children with us for the ultrasound. She refused to allow Shawn and the boys in the room (Clare was at school) and would not budge. Shawn asked her what she would have done if I had come alone with the kids, and she said she would have refused to do the ultrasound and made me reschedule for another time without kids. (Note - this was not mentioned to me at all when I scheduled the ultrasound appointments and have never had problems like this with my past three pregnancies.) I personally love my OB, but am quickly becoming very angered at the attitude of the techs and some of the nurses towards my family. It's an OB's office!! Shouldn't they at least tolerate children?? Instead, they treat them like they are a nuisance. Before my mother bear comes out combined with my pregnancy hormones, we'll just drop it. I was not keen on the idea of having a fetal echo done this pregnancy, but if my OB says she wants another ultrasound to look at the heart, I am going to request a fetal echo instead. For obvious reasons, I want a good look at the baby's heart, but I also am not putting myself or my family through the disapproving comments of the ultrasound staff again. Jamie at least is old enough to understand when these ladies state that children are not welcome or wanted. These are not attitudes I want my children around or have to endure. At least I know the echo tech, and she loves my family and will gladly let my kids come in and watch a video during the echo!

There's our week in a nutshell! Whew!

Tuesday, September 16, 2008

Clare's First Day of School

This is a belated post since Clare's first day was on September 8, the Monday following our water-logged weekend. (Which explains why Clare's first day of school photos were not taken on our front steps, but outside on the curb at the local Fairfield Inn!) She was so excited to go back to school. Every day, she greets me with the question "school today?" when she wakes up in the morning. She is loving preschool!

Sunday, September 14, 2008

Aaah... A Shower!

All I have to say is our running water in the house is back!!

Thursday, September 11, 2008

Flood Photos

You can see through the trees where the pond is supposed to end!

Our neighbor's car. Thankfully we moved our cars in the middle of the night down the street where the water did not reach.

Our neighbor's truck and a kayaker enjoying the new river.

Smart-a** neighbors taking a leisurely float on their rafts.

Me, in the middle of the night, taking a stroll down our street.

A video I shot the next morning from our front door of our new river.

Staying Afloat

The water puns are endless!

Thank you to all those long-distance for your thoughts and prayers. And thank you to our local supporters who have kept us clean, fed, and generally making some sense out of the chaos!

Right now, we are staying afloat. Our basement has been gutted, so we're starting from scratch down there. (Hey, at least this is finally our chance to get rid of the deep plum walls in Shawn's office! Who paints a basement room dark purple??? One of our neighbors asked Shawn if it was the S&M room!!) Shawn met with our floor guy this afternoon, and scoped out Home Depot for wall materials. Because both the family room and Shawn's office were in the basement, our dining room is now jam-packed with stuff (stuff that Simon and Clare are having a blast spreading over the rest of the house every day!). So our priority is to get the basement at least in some kind of shape to start putting things back down there. We're supposed to be getting the basement fogged to kill any mold in the next couple of days. With Jamie's severe allergies and Clare's compromised health, we are not taking any chances in the mold department. The city has been great in arranging to have the garbage on our street picked up every day. That is essential because almost every house has a big pile of garbage daily as everyone sorts through their damage.

We still do not have fully-working drains and running water yet. Our pump was supposed to be back up yesterday, but still nothing yet. The new goal is by this weekend. We have been quite inventive in keeping everyone reasonably clean! It's amazing what you can do on limited resources! I think Shawn has been able to hook up our computer again, so I am going to load up some photos soon.

Tuesday, September 09, 2008


After a crazy week of doctor's appointments, Jamie starting kindergarten, Clare's echo, and my ultrasound, we ended our week (or so we thought) with a car accident on Friday. I had all three kids in the car with me, and everyone is okay, but our car was pretty damaged. I was on the highway when a tire came flying out of nowhere and hit the front of my car. You would be surprised how much damage a tire can do when you are going 65 mph on the highway! It caved in the front of my vehicle, which died immediately. I was able to cruise over to the side of the road safely. Our guardian angels were definitely looking out for us that day. So far, the insurance company thinks it is repairable, but we are waiting on whether the body shop agrees or not. We do not need a totaled car right now!

At around 2:30am on Sunday morning, we were awakened by fire trucks in our street. When Shawn went outside to check out what was going on, he was shocked to discover that our street had been literally turned into a river overnight, thanks to Tropical Storm Hanna which pelted our city with reports of up to 6" of rain! We took some great photos and videos, but our main computer is not functional (I am on Shawn's work laptop right now), so we will have to share when we are up and running again). We live on a dead end cul-de-sac and, at the end of the cul-de-sac, is a little pond. There is still a lot of debate of what exactly happened, but right now, we understand that there was some negligence in maintaining a dam at the far end of the pond (to prevent the overflow to run off on the highway). When the torrential rains hit, the water had nowhere to go, but to turn our street into a river. We were blessed in that we are on the high side of the street. The backyards of the houses on the opposite side of the street were literally the new pond. Many of our neighbors have lost their houses completely.

Shawn checked our basement before we went back to bed around 4am on Sunday morning, and thankfully we were dry. When we woke up a couple hours later, we discovered a flood in our basement. Over the next couple of days, everything has snowballed. Our water was shut off, we could not leave our neighborhood (unless you were walking wearing high waders), and everything was chaos. We truly were in a disaster zone. The city has been great so far - providing port-a-potties on our street (which has been so much fun for the pregnant lady who uses them four times an hour!) and even a portable shower unit parked right in front of our house. The fire department, environmental services, and Department of Transportation has been working overtime pumping water out of basements and off the street. Currently we are at a point where the majority of the street is finally dry (except for right near where the pond should be), we have limited water (can flush our toilets, but only a couple times a day - still no showers, washing machines, dishwashers), and have entered the clean-up stage of the process.

Like I said, we are lucky compared to some of our neighbors, but even we have lost a good portion of our basement. Our basement was three-quarters finished, so we lost all our carpeting, drywall, even ceiling tiles. The Health Department has come through every house, since our street is hooked into a pumping station in relation to the pond. Therefore, some of the water on the street and in the houses was sewage water. Anything (other than plastic, metal, that kind of stuff) that came in contact with the water has to be disposed of. We had many items (such as the majority of the kids' toys) in the basement that were up high so have been saved (and, thank God, all my scrapbooking stuff was saved as well as most of Shawn's office equipment). We've lost some big household items, like our baby swing, mattresses stored in the basement, anything cloth like that. The bulk of our damages lies in having to gut our basement and start over.

We are "treading water" right now! Jamie and Clare are still going to school, and we are trying to lead as normal a life as possible for their sakes. We are not near any of our family (who have all been worried about us and we talk daily), but have some really great sets of friends who have watched the kids for a few hours, invited us over for dinner, and let us bathe the kids at their house. I spent last evening at the laundromat catching up on some laundry to get us through the next couple of days. Our small neighborhood community of about ten houses have really come together through this. One of our neighbors owns a construction company, and a crew of his guys are spending an hour at every house today doing whatever needs to be done, free of charge. We have chosen to have them spend their time at our house ripping out the rest of our drywall. Shawn and I hauled our carpet and pad out over the last two days, which was a grueling job, so it will be a big help to have aid in removing the drywall.

We may be somewhat stinky, a little on edge, and living on paper plates, but at least we are together in our home!

Saturday, September 06, 2008

Catch of the Day

This is what happens when you take a girl fishing:

Thursday, September 04, 2008

It's A...

okay, maybe we will reveal what our ultrasound revealed today...


Wednesday, September 03, 2008

It's A.....

echo! (Got you... ha ha ha...)

Clare had her six-month cardiology appointment and echocardiogram today. I just can't keep the good news in, so... NOTHING HAS CHANGED! Which is really, really, really great!

On the pessimistic side, the fact that nothing has changed means that Clare has not necessarily gotten better (and her pulmonary arteries have not really grown, which her cardiologist said could be due to the stents limiting their growth), but I am an optimistic girl and can't get over the fact that Clare has not gotten worse! Her gradient measurements are pretty much the same as they were six months ago. Her aorta gradient measured between 11-15 mm, which is minimal (to give you an idea of how good that is, prior to Clare's open heart surgery, her aorta gradient was 125 mm). Her blood pressure is maintaining good measurements, and even the pressures on the left side of her heart were not too bad (at 50% of the right-sided pressures, when in the past, her left-sided pressures have been at 100% - a typical heart should be at 25%). So, all in all, we were very happy with that appointment! Clare did great during the echo and lay quietly on the bed watching Elmopalooza (lucky us - and her two brothers who were mesmerized by it as well). She does not have to go back to the cardiologist's until around her fourth birthday, which is seven months away. I cannot say enough how thrilled we are with all this news, especially since next weekend marks the one-year anniversary from Clare's last catheterization. To have seven more months is amazing!

Tuesday, September 02, 2008

Kindergarten Kid

Jamie started kindergarten today. There really is not much to report since Jamie acted like it was no big deal and, other than playground time being his favorite part, we have not been able to extract too much information out of our kindergartner. He was excited to go back to school, but since he is in the same school that he attended last year, has the same teachers, and his current best friend goes to that school as well, he was all ready to go. Absolutely no looking back this year.

Jamie did obligingly sit on the front steps for our traditional First Day of School photos, and Shawn was able to capture some more pictures before and after at school. At his open house last week, we had a chance to talk with his teachers about how kindergarten is going to differ from preschool. We are excited to see Jamie grow more this year as he embarks on new adventures, such as reading, writing, and math skills beyond counting.

Clare has her preschool open house this week and then starts next week. Soccer season has begun with weekly practices and Jamie's first game is this weekend. Swim classes resume next week. Our fall schedule has begun!

Wednesday, August 27, 2008

City Life

We recently visited my sister Christina and her husband Tee Jay in New Jersey. It was a whirlwind visit - very fun, but also very tiring! (And I know everyone we saw in NJ and NYC can attest to that!!)

Chris and Tee live about an hour outside NYC, so we thought it would be fun to take the kids into the big city for a day. Shawn has always wanted to see the Statue of Liberty (and I have never seen it either), so we discussed that possibility. Then Jamie mentioned one day before our trip that he wanted to see the Statue of Liberty someday (apparently he saw it on the Wonder Pets). That cinched the deal for us! Between Christina and I, we came up with a convoluted schedule involving a train ride from NJ into Penn Station, subway ride to Battery Park, and ferry ride over to Liberty Island. I think Jamie was the only person out of the seven of us going who fully enjoyed every bit of the travel! Thankfully, Christina's best friend lives in NYC and was able to be our tour guide when navigating the city (props to Heather and Ben - you're the best for devoting an entire Saturday to our crazy family!).

Seeing the Statue of Liberty up close was astounding. I never realized how big she is! Jamie was in awe of the statue and begged us to take a photo of him with her (he posed the photo himself - Coke bottle and all!). After Liberty Island, we came back by ferry and walked to Ground Zero, which is only a few blocks away. Unfortunately, you could not see anything because it is all closed off since the plans are in work to finally build the memorial. It was still a somber moment to realize how much destruction was wrought on September 11. Just like the Statue of Liberty, I never realized how much space Ground Zero encompassed.

From there, we headed back to the subway to make our way to Times Square. (And for those of you have never had the pleasure of traveling around the NYC subway system, it is most definitely NOT stroller-friendly! Never mind two strollers-three small children-two pregnant women-friendly!) Times Square was its typical hustle-bustle crowds everywhere. The kids were in awe - I don't think they have ever seen that many people at one time before! By this time, it was getting late, so we only had time to do one more thing. And with three children that turned out to be Toys 'R Us! It was pretty cool, I must say. The store has a ferris wheel inside! With each car being a different theme - M&M's, Barbie, Sponge Bob. Jamie and Clare loved every inch of the store. Even Simon was fascinated with everything we saw (and loved playing with the big Thomas train table). I would say the only downfall to the biggest Toys 'R Us we've ever seen is that we walked out of there with Tickle Me Elmo (Clare would not be dissuaded from her choice of toys!).

After a late night and exhausting train ride back to NJ, we had a lazy Sunday morning, went to church with my sister, then met her husband at the Staten Island Zoo, where he is the coordinator for special events and volunteers. Other than during our trip to Florida, we have not made it to the zoo this summer, so Jamie and Clare were excited to go to the zoo. The Staten Island Zoo is a small zoo (perfect for a relaxing afternoon), but with Tee Jay working there, we were able to do some neat stuff. We received a hands-on experience with some of the animals, such as a ball python, Madagascar hissing cockroach (yeah, you can just put that one back in its box), and a monitor (aka BIG lizard!). We were also able to watch the zookeepers feed some of the animals, including mice to some really big snakes and a 5'6" moray eel. And then there was the excitement of Jamie playing with Tee Jay's zoo radio and stating, "The bobcat has escaped" to the zoo! Two seconds later, a voice comes over the radio asking, "Repeat that transmission, please?" Oh, Jamie! Thankfully Tee Jay was able to clear everything up very quickly and no damage done. After the zoo, we headed back to their apartment for a delicious home-cooked dinner.

We had a great time with Christina and Tee Jay. It was awesome to see my pregnant sister (whose belly is as big as mine!) and talk baby talk. This was our last summer fling, and school starts soon.

Tuesday, August 19, 2008

One, Two, Three...

Clare can count to 10! Popped out of her mouth one day. Her vocabulary continues to rapidly expand, and she is doing a great job forming sentences. I love her top three new sentences - "Fight me, Mama," (as in brandishing a sword at me), "Go away, Simon," and "Leave me alone, Simon" (poor Simon!). There is a big BUT, though... unless you hear her say the same word over and over (and can realize in context what she is referring to), she can be very difficult to understand. Her consonants are very soft, especially her final consonants, and her speech is somewhat slurred. Clare receives one hour of group speech therapy in school (which was cut to one half-hour during summer session), and we have noticed great results, but I still feel that she needs something more. I also don't necessarily want to increase her services at school which would cause Clare to be removed more often from her classroom. Therefore, we are looking into private speech therapy outside of school. Lucky for me, I have some great friends with some great connections! (You know who you are!) We are hoping to get her in with the best shortly (fingers crossed). In the meantime, we are content hearing that sweet little voice count, "One, two, three..."

Thursday, August 14, 2008

Super Jamie

Poor Jamie has had a rough summer. (Not really, but I think he thinks so.) The weather here has been extremely erratic, to put it mildly. Almost daily thunderstorms, hail, even a tornado just north of us, and lots and lots of rain. Our outdoor outings have been few, and we don't even get the luxury of lazy afternoons and evenings spent in the backyard due to the temperamental weather. We met friends at a playground the other night, even though it had rained on and off all day and was threatening more rain. We just had to get out of the house! Jamie was in ecstasy, being able to run, climb, and yell to his heart's content!

But we have had a busy summer as well. Since Clare had a five-week summer school session, I wanted Jamie to stay active and involved as well and our days not just be wrapped around Clare's drop-off and pick-up. He is enrolled in some programs at our local children's museums, and those have been a big hit. Each program has a different focus - forts, muds 'n suds, frogs, fun boy stuff like that! Jamie also just completed a week of Vacation Bible School at our church. This was his first time going to VBS. He was a little nervous at first because there was only one other child he knew there (and that boy was in a different class), but by the end of the week, Jamie enjoyed himself and is already talking about next year. Jamie starts soccer in our town league in a couple weeks. Shawn took him shopping for his cleats and shin pads, and Jamie begs to go outside and practice daily.

Today we finally had our appointment with the allergist. When Jamie's seasonal allergies kicked in big time this past spring/early summer, it took four allergy medications to get his symptoms under control. The pediatrician referred us to the pediatric allergist, but the waiting list was months long. So today was the day. After going over Jamie's history with the doctor, they did the scratch test on Jamie's back, testing for 22 environmental allergens. Jamie tested positive for 18 of those! He is allergic to all the trees, grass, weeds, dust, cats, dogs, and one type of mold. (The four allergens he was not allergic to were the other four types of mold they test for.) His back instantly was filled with angry-looking red welts and hives. He had to lay on his stomach for 20 minutes without touching his back. It was a painful struggle, but Jamie was a trooper. Right now, we are adding one more medication to Jamie's list and keeping him on his allergy medications year-long (we used to just give them to him seasonally). The doctor advised us to wait until next spring and see how he does through the remainder of the year until the start of allergy-season. We were warned that his allergies would most likely get worse, since he had such strong reactions at such a young age. Allergy shots are highly likely in his future, but I want to hold off as long as we can for those (once started, they involve 4-5 months of weekly shots followed by 3-5 years of monthly shots). I am not surprised that Jamie has allergies (given his severe symptoms this year), but I was shocked by the number of allergies. Like everything else, we're going to take it one step at a time and see what happens.

Next comes kindergarten! Jamie's open house is in two weeks, and then he starts right after Labor Day. He has seen his best friend from school over the summer (they just had a marathon six-hour playdate yesterday!), but I know he is ready to get back to school and seeing his friends there.

Wednesday, August 06, 2008

Blueberry Picking

The Rules of Blueberry Picking:
1 - Simon: Eat more than you can pick.
2 - Clare: Pick only the green berries.
3 - Jamie: Fill your bucket as high as you can then complain that you were given the smallest bucket there.
4 - Tree: Spend more time taking photos than picking.
5 - Shawn: Not only pick blueberries, but pick garlic, zucchini, and red potatoes.

We have not made it strawberry picking yet, but had a blast blueberry picking at our favorite organic blueberry farm. After picking blueberries and veggies, we enjoyed a picnic lunch (complete with the most fabulous blueberry lemonade) and watched the helicopters from the nearby fair. Then we stumbled across the Discovery Center of the Great Bay Estuary. One of those diamonds in the rough - the kids were able to hold horseshoe crabs, green crabs, lobsters, all kinds of marine animals collected from the local tide pools. So cool! Enjoy our day! (The last photo is Baby Bonita's progress - s/he was feeling a little left out.)

Monday, August 04, 2008

Monkey Boy

Simon turned 15 months old on August 1. Where did my baby go? Jamie and Clare were both a few months older when I became pregnant with the next child, so I was totally with it during their transition from baby to toddler (as in not completely fatigued and feeling like I got hit by a semi every day). (Okay, Clare more made this transition over the age of 2, so Simon was already born, and I was almost fully functioning again!) But with Simon, I feel as if I completely missed the day when he decided that he was no longer a baby. I am sure I was in the bathroom during this point, but I wish someone had told me it was coming, because I would have popped my head out for a little bit at least.

We have two words to describe Simon in our house - "sweetness" and "trouble." He is the sweetest baby. He loves to crawl up to me and lay his head on my leg. He loves to cuddle and snuggle and has the brightest smile. It stretches from ear to ear, displaying all eight of his shiny little teeth. He throws his head back when he laughs and loves to be involved in all that Jamie and Clare do, much to their frequent dismay - I hear lots of "no, baby" (from Clare) and "no, bubba" (from Jamie). However, (a BIG however!) Simon is definitely a mischief-maker. Although he does not walk yet (thank goodness because I truly fear that day), he is a fast crawler and is starting to become a fast cruiser as well. More frightening, though, Simon is a climber. In and out of the bathtub. Up the stairs (but has not figured out down except by lunging, so he has fallen down the stairs 3 or 4 times already - no serious injuries yet!). Climbs onto toys to get on top of other toys. One day, at the pediatrician's, Simon was safely strapped (or so I thought) into the double stroller, which was parked next to the examination table. I was helping Clare with something, and when I turned around, Simon was sitting on top of the table. I am kind of glad I missed how he was able to crawl out of his buckles and climb onto the table. He sat there, so proud of himself, with his trademark grin.
Simon is definitely making his mark as the third child (following in the footsteps of some other third children in our family!). Independent, strong-willed, determined, and as sweet as can be.

Thursday, July 31, 2008

Clare Bear

Clare has one week left of her preschool summer session. She loves school (can I say it enough?). We had one day where she was reluctant to go in, and that was Auntie Erin's first day with us. (She was afraid she was going to miss out on a whole lot of fun while in school!) Her vocabulary and sentence formation continues to explode. When we wrote her IEP for the 2008-2009 school year, one of Clare's goals was to make 4-5 word sentences. Even though this goal was written for September's IEP, Clare has not only started coming out with sentences that long, but she strings sentences together and has even started having little conversations with us. She stills slurs her consonants together, though, so a good portion of her speech remains unintelligible. Every day, we pick up more and more of what she is saying, but an outsider would probably still have a tough time. Right now, she only receives group speech therapy at school, but if we do not see any improvement in her enunciation, then we are going to look into getting some one-on-one speech as well.

Clare's teacher told me this morning that "Clare is becoming comfortable in school" to the point that she is very "chatty" in circle time. Her teacher laughed about it and said it was so cute, but, being the parent, I was more concerned that Clare was behaving herself! I was assured that Clare did listen when she was told to stop talking or given other directions. Of course, I think it's cute that Clare is chatty, but I don't want her to be a disruption either! All the teachers in Clare's classroom just love her. (What's not to love, right?)

In medical news, Clare has her next echo scheduled in September. When that appointment comes, it will have been six months since her last echo! We think she's doing fine because her energy level has been great, her eating is going well, and she looks beautiful, but I still have trouble waiting to find out what's going on in her heart. Clare's eating has been going so well that we cut out her appetite stimulant a couple months ago and have noticed no change in the quantity that she eats. We also cancelled our next appointment with the feeding team since skill-wise, she can eat almost anything (except meat - she still has a tough time chewing meat). Her biggest challenge remains her pickiness. Top foods on Clare's list - toaster strudels, poptarts, cheese puffs, and cheese and crackers. She has made strides in school with eating creamy textures, such as yogurt and pudding. But no luck when it comes to fruit or vegetables. Bananas remain her fruit of choice. We notice that she definitely still leans towards foods that do not require much chewing. And she has graduated from M&M's to the finer chocolate - mainly Dove. She is not satisfied when we offer her M&M's anymore - she tells us sternly, "No, chocolate. I want chocolate." A chocolate connoisseur at the age of three.

Other than a bad double ear infection a month ago, Clare has been doctor-free this summer. It has been so nice! With fall, comes a slew of appointments, but for now, we are gearing up to enjoy the last month of summer. I cannot believe it is almost August. Wow!

Saturday, July 26, 2008


You know your housekeeping skills need reevaluating when your 5-year old comes up to you after his bath and says, "Mom, I cleaned the tub for you." And, even though he used the baby's washcloth and your expensive, fragranced body soap, the tub looks the cleanest it has in a month.

Tuesday, July 22, 2008

Eye Can See You

Today was Simon's eye surgery. The technical name for Simon's eye problem is right eye dacryostenosis (i.e. clogged tear duct). This is a very common issue in infants that commonly clears up in the first 6-9 months. However, since Simon is almost 15 months old and has had a gunky right eye every day of his life and numerous eye and skin infections, it was time for surgical intervention.

The actual procedure was fairly simply - wire probing to open the clogged duct. He was under anesthesia for 30 minutes tops, with the actual probing taking only 5 minutes. Simon is such an easygoing boy that I know things could have gone much worse. He was NPO (cut off food and drink) after midnight, so we were not sure how the morning would go. The little stinker (whose normal rising time is 5:30am) had to be awakened at 6:45am so we could make it to the hospital on time! On the plus side, he did not realize that we had neglected to feed him breakfast until about 8:30am. After exploring his crib, the hunger grumpies did set in (add to the fact that four of Simon's molars cut through overnight) so the next hour was spent passing the crying toddler from parent to parent. Once the nurses came to get him, though, he went willingly into their arms and they carried him off without a fuss. After surgery, the recovery nurse told us that he didn't make a peep when they put the anesthesia mask on them. He just stared at the doctor with his big eyes, then fell asleep.

(The weirdest part for me was that I just couldn't shake the feeling that we had brought the wrong kid! Comforting him in the crib, pacing the pre-op area with a crying baby, seeing Simon with leads on his chest, it all felt very surreal.)

Once the surgery was over, we were brought back into recovery where we could hear Simon crying. The nurse passed him to me, and we sat in the chair rocking for about fifteen minutes. He was inconsolable - did not want to eat or drink and could not get settled. Finally, he fell asleep again. They monitored his vitals and said the best thing was for him to sleep off the remainder of the anesthesia. After about 45 minutes, Simon woke up. Blinked twice, broke into a huge grin, and was his normal sunny self. He ate Pirate Booty, downed some water, charmed all the nurses, and proclaimed good-to-go. Erin was with Jamie and Clare, and we made it home about 15 minutes before they arrived home from picking Clare up from school. They were happy to see Simon home, then he went down for a four-hour nap! We had a quiet afternoon, delicious dinner brought to us (thank you, H!), and when Simon woke up, his eye looked terrific. You would never know he had surgery on it hours before.

It is too soon to tell if the surgery was long-term successful. If Simon's duct clogs again, it will eventually require the placement of an artificial drainage tube to relieve the chronic tear duct obstruction. However, right now, his eye looks great - a little pink around the edges, but other than that, nice and clear! I am glad everything went so well, and it is all behind us now.

(Shawn laughed at me for bringing the camera, but I like to document this stuff! The top photo is Simon enjoying the hospital crib when he was still happy. The bottom photo is on the way home. A little groggy, but looking good.)

Monday, July 21, 2008

Best of the Best

Best Housekeeping Award: to our cat Midnight... for taking all of the small toys and items I had placed on top of the piano (for putting them away upstairs at a later time) and removing them to the far reaches under the piano.

Best Discipline Award: to the mom at swim class this morning whose 4-year old kept going too near the edge of the pool... after the tenth time of yanking him back to the bench, she said, "If you don't behave, when we go to the doctor's this afternoon, I will tell him to give you a shot."

Best Mommy Suck-Up Award: to Clare... when asked "Who's the prettiest girl in the world?" she answered "Mommy." (Okay, her first answer was "Papa," but I'll take second place.)

Best E-mailer Award: it's a tie! to my sister Christina... who keeps me in stitches with her witty comebacks to ridiculous e-mails I like to share with her and to the former fellow parishioner who has so thoughtfully put me on her mass e-mail list... for thousands upon thousands of forwards ranging in everything from the deal of the day at Mary Kay to the warning chain-mail on the evils of Baby Orajel.

Best Food in the Entire World Award: to nachos... I think I've had nachos five times so far in the last six days. And just made them again for myself at lunch. And will probably order them tonight when we meet my mom and sister at Chili's for dinner. At least it's a fairly healthy craving.

Monday, July 14, 2008

The View From the Toilet

This pregnancy has thrown a lot of "morning" sickness my way. I was fairly nauseous during the first trimester of Simon's pregnancy as well, so I am not surprised, but it still is rough. My general feeling of yuckiness has actually gotten better - from an all-day thing to usually just 2 pm on. But it still throws me for a loop. I hate that I constantly feel like I have a big dead weight in my stomach. I hate that my house is a mess, prepared meals are a distant memory, and the afternoons find me prone on the couch while the kids play around me. I hate that if Simon pushes too hard on my stomach or Clare elbows me in just the wrong way, I will have to make a mad dash to the bathroom. (Although I admit it is cute that Clare now will spontaneously start play-coughing, run to the bathroom, make some fake gagging noises over the toilet, then come back out to me. With a big grin on her face, she will wipe her mouth with her hand and say with a big sigh, "all better." You little stinker...)

At the same time, though, I cannot help but marvel over this new little life, gagging and all. For those who don't know me well, becoming pregnant is not an easy thing for me. To put it briefly, Jamie, Clare, and Simon were all extremely well-planned. Baby Bonita is a shocker. I never thought I would just get pregnant. In fact, at my six-week postpartum OB visit after Simon was born, my OB brought up birth control. I don't believe in artificial birth control, and we practice Natural Family Planning. Plus, as I cheerfully reminded my doctor, avoiding pregnancy was never our problem. My OB knows my views on this, but she still equally cheerfully reminded me that just because I needed some help becoming pregnant in the past and just because I was nursing did not mean I could not become pregnant. Well, I am thrilled to say she was right!

So while I am hovering over the toilet, I remind myself that all of life is a phase. This too will pass. Hopefully in the next week or so (now that I am almost in my second trimester). Then I will have other equally delightful pregnancy woes to moan about!

Saturday, July 12, 2008

Monday, July 07, 2008

Williams Syndrome Barbecue

We hosted our first Williams syndrome event yesterday - a big backyard barbecue at our house. We were thrilled to have 11 families attend! The individuals with WS ranged from a beautiful 9-month old (recently diagnosed who lives about five minutes away from us!) to a 24-year old woman. (Who also lives in our town and happens to be the same woman I met by chance in Clare's cardiology office a few months ago.) I have to say the barbecue was a great success!

We visited with families who have become friends over the past three years and met many new friends. It's amazing how complete strangers can become so close simply because you have walked in similar shoes. These events give us a chance to share and learn from each other. We commiserate over the scary moments, discuss treatments, options, doctors, therapies, you name it, and can actually compare our children developmentally without sounding like snotty "playground parents." Most importantly, to me at least, it reminds me that our family is not in this alone. Sometimes it feels as if we are the only people in the world living with a child with Williams syndrome. None of our friends understand the ins and outs of what we go through with Clare. Even our extended family can never truly comprehend the struggles and challenges. But these other families can and do. I am so grateful that we live in an age where our world has gotten smaller through technology, and we have this opportunity to connect with those who live miles and miles away.

I hope everyone had a great time! We did! I ate too much and didn't get to spend enough time talking with everyone. We cannot wait to host another barbecue next summer.

I have not downloaded my camera yet (I know, I know, big slacker), so pictures are forthcoming. But Laura did a great job putting together a slide show of the kids at the barbecue, so check it out at her blog.

Thursday, July 03, 2008

This Just In

It's time for lazy summer blogging. You know, where we are so busy bumming on the beach or doing that elusive strawberry picking that I have no time to write. Oh, I wish. The sad truth is we have all been sick in one form on another for a couple weeks now. It started when Simon came down with a high fever and vomiting. After a couple days of that, he was back to his smiling self, but then Clare came down with the same virus. Of course, since this is Clare, it also entailed a doctor's appointment, near dehydration, and two miserable days of Clare whimpering and moaning between her bed, the couch, and our bed. Thankfully, we avoided the hospital this time and Clare also was back on her feet. Then Shawn and I were both struck down with severe head colds at the same time. And finally Clare developed a severe double ear infection as a lingering result of the virus, so has been a short fuse of temper lately. Add to that, my never-ending all-day nausea, and our house was not a pretty sight. Only Jamie escaped unscathed. (I think he paid his dues with weeks of allergy attacks early in the summer.) Now everyone is more or less almost back to normal, Clare is on antibiotics, and my mother-in-law (God bless her) is here for a few days.

In other exciting news, my sister Christina announced she was pregnant last weekend! (Thus the Baby Bou timeline along with Baby Bonita's.) She is due just a few weeks after I am, so it is exciting to be pregnant at the same time and that the cousins will be close in age. And my other sister Erin is coming for a long-awaited visit in a couple weeks. The kids have missed her dearly since she moved about a thousand miles away, so we are all looking forward to her trip!

Wednesday, June 25, 2008

Oh, Clare....

Don King called - he wants his hair piece back.


Before embarking on vacation, Shawn and I agreed that the souvenirs would be kept to a minimum. You know, one suitcase full and that was it! (Just kidding!) But that Jamie is just a master at collecting stuff. He came home with eight new stuffed animals! And not because we purchased all of them for him. There were two he won in a game, the kids each received a complimentary Shamu from the hotel we stayed at in Orlando, and multiple other goodies. The souvenirs grew out-of-control! We ended up shipping a huge box of stuff home.

But, by far, the best souvenir we returned home with was this:
Baby Bonita - due January 25, 2009
(Okay, not actually "from" Florida, but we found out we were pregnant in Florida.)