Monday, December 14, 2009

"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 readingCity 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!

Thursday, December 10, 2009

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, December 03, 2009

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...

Wednesday, December 02, 2009

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!

Tuesday, December 01, 2009

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!

Friday, November 20, 2009

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!

Tuesday, November 17, 2009

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 readingThe 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!

Friday, October 30, 2009

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.

Monday, October 26, 2009

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!

Thursday, October 22, 2009

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??

Monday, October 19, 2009

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...

Sunday, October 11, 2009

Cheeks

I love that this baby is all cheeks!

Wednesday, October 07, 2009

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!)

Sunday, October 04, 2009

Swirling

I feel like one of those plastic snow globes. Just when I think I can see the picture inside, it gets shaken up again and the snow falls everywhere blurring my vision. I have to wait for the snow to settle so I can try, once again, to clearly see the picture. And it never is clear. Not completely. There is always something still swirling in there. Even the tiniest bump sends it all flying once more.

Lately I am trending towards a negative outlook on everything. I don't know why. During Clare's first year, I definitely had my horrible moments, but, as a whole, I felt like I had it going on. We went through some very tough times as a family. Even though my life had been turned upside down, I felt like I coped amazingly well with it. Now this could just be my perception looking back three-plus years later. Maybe I've been this crazy all along. Recently, however, my coping skills are falling apart. Everything is catching up with me, and the stress is burying me in negativity.

I know how blessed I am. I count my five biggest blessings every day - my incredibly supportive, loving, hard-working husband and my four beautiful children. No matter how bad the day was, once everyone is tucked in their beds and sleeping soundly, I reflect on how much God has given me. Yet it's easy to feel this way when all is at peace in the house. It is so much harder to hang on to that feeling when the baby is crying, the 2-year old is biting the 4-year old, and the first grader is complaining that he doesn't want to do his homework, the little kids are too noisy, and dinner smells yucky (in that order).

It is incredibly hard to hang on to that feeling of blessedness when tragedy hits close to home. Last week, one of Clare's classmates passed away. He was a sweet little boy who had celebrated his fifth birthday only days before. During Clare's first year of preschool, it was just her and this boy on the extra day of the week. She loved him so much, and he was her first friend at school. She talked constantly about him at home. (See my April 2008 post Day Two.) When I heard the news on Thursday of his death, I was in shock and tears immediately filled my eyes. Sorrow for the family overwhelmed me - what a devastating loss for his parents and sister. How do you go on from there? I truly believe that this child is in Heaven with Jesus and is finally freed from the handicaps of his earthly body. Yet, at the same time, to mourn the loss of your child... I cannot even fathom it. And, selfishly, I rage against the fact that I, as a parent, am part of a community where children die. It's a reality here. Special needs children, children with heart defects, children with all sorts of medical problems.

I know I am blessed because four of my five children are still with me (my first pregnancy ended in a miscarriage, so I have one angel). And I have never lost a child who I had the chance to feel, hold, love, however long a life. A good friend of my sister's recently lost her baby less than an hour after birth. I have been keeping up with her blog and her loss overwhelms me as well. Overwhelms me with sorrow for parents in mourning and fills me with guilt that I have four living children when some people do not. I have always been a believer that God has a plan. But I can still question, at times, what could that plan possibly be? Why are these children taken away from their parents? I wish for just one moment that the snow would finally stop swirling to allow us a quick glimpse of the full picture.

Wednesday, September 30, 2009

Small Joys of Being a Mother

SO FUNNY: In Target with Simon and Clare. Against my better judgement, I let them get out of the cart towards the end of our trip. They sprint off ahead of me. I am pushing the mega-ton cart (the one that holds two kids sitting in the front contraption, then there's the actual cart itself) loaded with stuff and Violet perched precariously in her car seat on top. So I am trying to catch up with my runaway children, but going kind of slow so Violet doesn't topple off. I can see Clare and Simon running towards the Halloween section. They run through a decorated arch, then start screaming. I have never heard them scream so loud! They both turn around with petrified looks on their faces and bolt back to me. Now they're both in tears and clinging to my legs. Turns out there was a motion-activated bigger-than-life electronic creepy skeleton on the other side of that arch - just waiting for errant children to run by him so he can scare them back to their mothers.

The Plot Thickens

Violet started crawling yesterday, which was so exciting! Not as exciting today since it is only 8am, and I've already pulled playing cards, kleenex, a Bionicle piece, and fake plastic blueberries out of her mouth and rescued her from toppling down the basement stairs. Plus now she can find me in the house and cry at my feet until I pick her up.

Tuesday, September 29, 2009

School Day Photos

I am so bad at formatting photos on Blogger, but here are some photos from Clare's first day of afternoon preschool, Jamie's first day of first grade, and Clare's first day on the bus. They both started at new schools this year, and both are doing great and loving school!







Tuesday, September 15, 2009

Jumpy

I am starting to feel somewhat settled in our new school routine, and we are going to shake it up a little bit on Thursday. After battling my Mommy-guilt, we have decided to let Clare go on the bus to school. I know, I know, what's the big deal really? But I have HUGE reservations about that big yellow thing (even though Clare's will be a little yellow thing and might even be a van). I imagine all sorts of horrible things that could happen on the bus. Yet the time between dropping Clare off at school and leaving the house again to pick Jamie up from school is too short for Simon and Violet to properly nap. And my two little ones desperately need their naps. I weighed my negative attitude concerning the bus (and, mind you, I personally never had to ride the bus to school because I lived within walking distance) against these facts:
* four days a week, I have to wake up two grumpy kids from too-short naps and deal with their wrath for the remainder of the day
* this will allow me to put Simon and Violet down for naps before the bus picks Clare up, so they can get a quality naptime and make for a much happier afternoon all around (and the little ones do need their naps for their overall health as well)
* it's a Special Education bus with at least one aide on it and maybe one or two other kids that stops right in front of our house to pick Clare up - she has a seatbelt and booster seat for safety
* it's just to bring Clare to school - I will still pick her up from school after I pick up Jamie
* Clare is excited to go on the bus (and Jamie is jealous, but there is no way I am bussing him, too!)

So I need to tell the Mommy-guilt to take a hike. I know in my head it's ridiculous to feel like a bad Mommy because I am putting my four-year old on a school bus when I am perfectly capable of driving her to school myself. In my heart, though, I still feel terrible about the decision. I feel selfish - like I just want that extra time while the kids are napping to myself. And I do want that extra time! I won't lie! But I also want the little ones to be able to nap and not be stuck driving around in the car all afternoon. I don't want them to be tired for the rest of the day, red-eyed and whiny. I have to write this all out to justify to myself why my decision is a good one, made for the good of all of us, not just Clare. And that Clare will love this new adventure of riding the bus. Thank goodness Shawn finally talked me into our new fancy-schmancy camera so we can take lots of pictures!

Monday, August 31, 2009

Changes

Some changes I am ready for (like good-bye 95 degree weather and hello fall) and some not-so-much.

Jamie started first grade at his new school last week. Although he had a great summer, he was ready to meet new friends and get back to being in school, and I admit I was ready to get back into a routine and have somewhere, other than our house, for him to release all that energy, both physical and mental. Jamie is so enthusiastic in all he does, and he loves first grade. He is excited to wear a uniform, pack a lunch, and be at school all day. We are already hearing good reports from him and about him, and he beams from ear to ear every morning when we drop him off at school. Soccer practice has started again, and Jamie has moved up a division. He is thrilled with this as the higher division now plays with goalies (no goalies last year for the little kids!). He played two sessions of indoor soccer over the winter and discovered his love of goal tending. During their scrimmage at practice tonight, the coach said no one had to play goalie, but Jamie just naturally started tending the goal. Last year, the kids all seemed to just run around trying to all kick the ball at the same time. This year, you can see them starting to work together as a team and actually have some technique and strategy. It's amazing how much difference a year can make.

Clare starts school on Friday. This year brings big changes for Clare. She will be in the afternoon class, which makes me happy and a little wary at the same time. Happy for selfish reasons because I will have the two older children in school at the same time (last year, they had opposite schedules) and the two younger children still take afternoon naps. Wow - time for myself! Wary because Clare does not always do well in the afternoon. She has long given up napping, but the afternoon is usually a tough time for her. She expends her energy in the morning, so once lunchtime hits, she is ready to crash. It is usually a time when she vegs out with a video or we rest on the couch with books. I am not sure how she is going to do being in school in the afternoon. We do not have a choice, though, because that is when the 4-year olds have class. I am preparing myself that the first weeks will be rough for her, but hoping that she will become adjusted to the new routine. In the meantime, I plan on keeping our mornings low-key so as not to use up all her energy before school.

The bigger school changes for Clare are that her preschool program has changed. The school department decided not to continue renting the facility they used for the preschool program. Clare's class has been relocated to a different school. The principal of the preschool retired at the end of the school year as well. Instead of hiring a new principal, the school department decided not to have one principal solely for the preschool and, whichever school the class is in, they will fall under the authority of that principal. It makes sense when looking at budget cuts and that the preschool classes are now scattered through the school district. Yet I wonder if NOT having one principal to take charge of the developmental preschool will affect the quality of the preschool program.

We knew all this was happening for months, though. However, we learned of the biggest change in the last days of Clare's summer session - her beloved preschool teacher was leaving. Miss Pam relieved so many of our fears and anxieties about sending Clare off to school (and Shawn always chuckles that I call her Miss Pam - "you can call her Pam, you know, since you're an adult"). There is so much nervousness about sending any 3-year old to school, especially when I've had her with me all day, every day since she was born. But there is so much more vulnerability in sending off your special needs child. In about a week, Miss Pam erased the worries I had about Clare going to school. Clare loved school right away, and I know Miss Pam was a big part of that. We've been preparing Clare over the last couple of weeks that, like Jamie, she would also be going to a new school with a new teacher. She was a little anxious about who her new teacher was going to be and asked repeatedly. Last Friday, after still not receiving any information about when Clare's first day of school was (not a good sign of things to come!), I called the new school. I talked to a wonderful secretary who gave me all the information I needed plus informed me that Clare's new teacher would be Miss Karin. Miss Karin was the paraprofessional in Clare's classroom, but she has recently graduated and is now a full-fledged special education teacher. So she is taking over the class. I told Clare, and we were both grinning. This has given me hope that maybe things won't be so different. At least the school department has given the class over to someone who knows these children, and the children will have a teacher they already know and love. So we are excited for Miss Karin!

Simon is quite the little comedian these days. He loves to tell knock-knock jokes (which never make any sense), make silly faces, say and do anything to get a laugh out of us. His imagination is developing rapidly, and I am reminded again and again of when Jamie was that age. We hear elephants and dinosaurs all over the house, his trucks have conversations with each other (way too cute to hear the 2-year old's perspective of a fascinating conversation!), and he loves to play dress-up. It's an interesting dynamic in our house that if all three of the older children are together, there is usually much squabbling. But if only two are together, they play so well. In the mornings, Simon and Clare come up with all sorts of ideas of what they want to do. At first, I thought it would be too quiet with Jamie at school, but they seem to enjoy having that time to do what they want (Jamie being the oldest and the loudest usually comes up with the schedule of events). It also gives us the chance to play "little kid" toys, such as counting and ABC board games. Clare and Simon are developmentally at the same age in many areas, so they have fun playing the same kind of games. Once Jamie comes home from school, though, Simon is all over him. Simon and Jamie are great buds (for the most part!). They wrestle, play super heroes, drive cars all over the house. Simon is finally at an age where he and Jamie can "be boys" together. I am not always thrilled with the craziness that ensues, but they sure have a good time!

I meant to post on Violet's 6-month birthday, but something always comes up. Now she is over 7 months old, and I can't believe how fast the time is flying by. It always does. In some ways, I think she may be my last baby, but then when I see how big she is getting, I don't know how she could ever be my last baby. That I will never have that adorable bundle of pudge again. Violet is at that stage of babyhood that I love best. She is so interactive - big gummy grins, "ba ba ba," and excited arms and legs whenever one of her siblings plays with her. She loves to sit and play with anything she can get her hands on and has started rocking back and forth on all fours. I am pretty sure she is going to be my earliest crawler. (To put it in perspective, Jamie crawled at 9 months, Simon at 12 months, and Clare not at all!) Violet is such a sweetie and has the biggest, brightest blue eyes. (Jamie, Clare, and Simon all have varying shades of brown and/or hazel, so to see those startling blue eyes is still a shock to me!) She is a big-time mama's girl. I may complain, but I really don't mind (even with an aching back). I know it won't be forever.

We are wrapping up our late summer vacations and ready for fall. We have two more trips planned before we officially close the door on summer. Then it's head-on into soccer season, swim classes, speech therapy, homework, baking, soup making, all the things I associate with the start of fall and cooler weather. My favorite time of year!

Sunday, August 23, 2009

Sincerely, Outraged Mother

Dear Steve "Shecky" Perlman,

I wanted to write you a letter to inform you that you did not ruin my day with my family. (Almost, but we rise above such events.) We journeyed to historic Philadelphia today to learn more about our country's birth and experience a piece of our nation's history. Unfortunately, we received you as our tour guide through Independence Hall.

For weeks, I researched exactly what we wanted to do to show our children about the United States of America in the city of Philadelphia. I knew immediately that I wanted us to tour Independence Hall - where such honored men as George Washington, Benjamin Franklin, and Thomas Jefferson walked its halls and made momentous decisions. The site of the signings of both the Declaration of Independence and the Constitution. The room where George Washington was appointed commander-in-chief of the Continental Army and where his "rising sun" chair still sits. Our family was excited to tour this historic building and arrived early to sign up for our timed tour. We waited patiently in line in the blazing sun and eagerly entered the building when our tour began. We settled our children in their seats (and, yes, with our nursing babies, a bathroom detour, and two strollers). Once your presentation began, however, everyone was quiet and ready to listen about the historic rooms we were about to view.

And then the fun ended. When you first shushed my two-year old and told me, "Keep it quiet over there," I admit I had my feathers ruffled by that comment. After all, Simon asking me "better, Mama?" because YOU had asked the audience of 50+ people "What was a BETTER sign that this is a painting of the signing of the Constitution?" was barely audible over the answers of the other people in the room. I personally did not think Simon was being disruptive. A 2-year old asking his mother a question in a crowded room? Come on, Shecky, imagine what he could have been doing - screaming at the top of his lungs that George Washington was a "bad boy", smearing Goldfish crumbs on the painting of the signing of the Constitution, running up and down the aisles and goosing the other tourists. But I wanted to be respectful, so I sat Simon on my lap next to Violet and asked him to be quiet.

Then you started telling jokes. When you asked the audience, "Where was George Washington during the signing of the Declaration of Independence?" and someone answered, "Fighting," I dutifully laughed at your quip - "What, fighting with Martha?" When you started to heckle a young man up front about "obviously not being married" because he looked confused by your humor, the rest of the audience started laughing and talking amongst themselves. Did you ask any of them to be quiet? Did you reprimand any of them for making a noise in the room? No, you did not. Instead, when Simon asked me what everyone was laughing about, you looked right at me and said, "You need to do something about him." The second time you told me to keep my child quiet, I could not keep MY mouth quiet. It was motherly-outrage that made me say back to you, "Could you please be patient? He is only two years old." But then you just glared at me. And refused to continue your presentation while I sat there and stared back at you. Part of me said to just sit there despite your obvious disapproval of me and my children, and part of me knew I had to get out of there before I said or did something I would regret.

So I walked out of your tour carrying my baby and holding my 2-year old's hand. And I was upset. Upset that you singled us out in a room full of people, simply because Simon was little. Upset that you forced us to leave the one place I had wanted to visit for weeks. Upset that Simon was now crying as well because he didn't understand how he had behaved "badly." (Which you did not, sweet Simon - you were so well-behaved in there. Better behaved than that rude man who was about 50 years older than you.) I vocally expressed my feelings outside to my family, took my time to cool off, then accepted the kind offer of another guide that my family, complete with children, could join his tour. I was proud of my husband when he confronted you. I don't believe a word you say when you told him that "five people thanked me" for what you did to us. And now I can laugh that you actually said to my husband that "your kid couldn't keep his mouth shut." Apparently he's not the only one.

Sincerely,
Outraged Mother

Thursday, August 13, 2009

Overwhelmed

So you have all been so awesome in your responses (through comments, e-mails, FB messages, and phone calls) to my pity party. This is why I love keeping the blog. Part of me just needs to get some of this stuff off my chest and let it go, which writing it out does. And I admit I need the affirmation and support that keeps me trucking. So when I thanked God and Shawn for keeping me on this journey, I should have thanked all of you, too!

I wanted to share one response in particular from a fellow mom of a special needs child. All the responses touched my heart and made my burden a little lighter today, but this one really hit home. I am going to save it on my computer and re-read it on those days when I need it. (And to the writer - there is a book of essays I am reading called "A Cup of Comfort for Parents of Children with Special Needs" - you should submit something to an editor someday!)

"I just want you to know that I really believe that you are a better Mom to all of your children, because of the challenges with Clare. You are a better person and friend because of it too. In school, you will see the families with challenges like yours or mine, there is always someone better off than you, if you compare (which you should not do, but us Mom’s do quite a bit!!!) and someone struggling more than you. There will be a time you are jealous of other families because their disabled kid masters something quicker than Clare does. Then years later that family will struggle with something their disability serves up that humbles you immediately because at one time you thought their grass was greener, and you watched them today and counted your blessings! Being a Mom in your shoes changes your perspective completely, makes us more humble, more accepting of differences and more focused on what is important, more human. As your typical kids get older you will smile to yourself as typical parents of usually one or two children fret over stuff that seems so small to you. Not in a smug way. I mean in a freer, I am not burdened by that anymore type of way because I have given it to God. We watched our special needs children struggle to do what so many people take for granted, and been given the gift of appreciating the regular day, and we are constantly reminded that a regular day is a blessing."

Wednesday, August 12, 2009

Sadness

I completely lost my temper with Clare last night. In my defense, it had been a very long day, two of the kids were sick, Shawn has been gone all week, and, after all the kids had finally been put to bed, Clare did something that ranks about a 7 on my 1-to-10 naughtiness scale (with 10 being “blowing up the house”). However, she is also only 4 years old (and a delayed 4-year old at that) and I am… well, a few years older than that. Plus I am the parent and she is the child. I should be able to control my temper and not fly off the handle like that. I know I am only human, but it still makes me sad that it even happened.

These are the situations when I am muttering inside how much I hate the cards I have been dealt when it comes to Williams syndrome, the developmental delays, the heart defects, the Great Unknown labeled Clare’s Future. Sometimes I just don’t know how to parent Clare. I don’t know where to begin. I want to give up before I have even started. I even uttered the words to Clare tonight that if she did this again, it could hurt her and she could end up in the hospital. Her hospital stay is still so recent that this put her into more hysterical crying. And I admit I knew it would upset her, which is part of the reason why I said it. I am not proud of how I reacted, but I am honest about it. Whenever I feel as if I have been unreasonable in my handling of a situation involving Clare, I am filled with an overwhelming sense of guilt and sadness. Feelings so strong that I do not feel when dealing with Jamie or Simon. I think to myself, how could you treat her like this after all she has gone through? Hasn’t the poor child been through enough? What if this is the night she does not wake up in the morning? How would you feel then?

I know that some of these thoughts and feelings are irrational, but that does not make them go away. In fact, they remind me over and over to think twice, take a deep breath, count to ten, say a prayer, anything to help me handle a difficult situation with Clare. Clare faces enough challenges in her life without having this crazy mother to deal with as well. As I am sure all mothers do, I want Clare to know that I am always here for her. I don’t want her to be afraid of me (which I think she slightly was tonight). I don’t want us to be crying on the bathroom floor.

I did not put Clare back to bed on a bad note, though. (I try never to do that.) We cuddled on the floor, I apologized, she apologized, and she fell asleep at peace. I am not sure if I will, though. I think I will always be second-guessing whether or not I can handle this job. I know it is only through the grace of God and the support of my incredible husband that I have gotten as far as I have.

Thursday, August 06, 2009

The Way We Are

I don't know if I will ever agree that my family of six is a "big" family, but the culture we live in certainly does. (I am blessed to be surrounded by friends of whom my family is one of the smaller ones, and our parish has many, many families of 6+ children.) It was not until I had four children that the words, "your hands are full," "you must be busy," and the incredulous "are they all yours?" became a daily occurrence in my life. Yes, truly, it is daily. I do not exaggerate. It then makes me chuckle when I hear this when I only have three of the kids with me (which is often lately since Clare has been in summer school and then Jamie had a week of Vacation Bible School).

I have never been a confrontational person (my mom can vouch for that). Growing up, I was always the peacemaker in my family. I still do not like confrontations, but I am quickly learning not to take anything from people who make comments. Especially those who make comments in front of my children. Never do I want my children to feel that there is something "wrong" with our family or that there is something bad about having a large family. I am currently working on my repertoire of short replies (suggestions welcome!). I do not want to be rude or set a negative example in front of my children, but at the same time, there has to be a rebuttal to the negativity that is implied when someone makes a comment.

I have also come to realize that our family operates under different "values" than other families. We live in such a consumer-focused, materialistic society. Sometimes I find myself falling into that trap, but remind myself again and again of what is important. Part is due to necessity (we cannot afford to buy everyone their own motorized Barbie jeep), but the majority is that I don't want my kids to grow up like that. To think they are entitled to everything they see. That if they want something, it's theirs.

After coming home from the hospital, Shawn and I discussed buying Clare a little car like the one she drove around almost nonstop during her stay. She is working hard on learning how to ride her tricycle, but she does not have the muscle strength to pedal for very long. And if there is even a little incline, forget it. This car, however, allowed Clare to zoom wherever she wanted to go, by using her foot power and without having the coordination a tricycle requires. We had decided that we really didn't have room in our budget to buy the car when my mother-in-law told us that they had that exact style of car sitting in their backyard from when my nieces were little. She offered that my father-in-law could clean it up and it would be Clare's. Even better - free! The car came to our house, and both Clare and Simon now fight over it daily. Even Jamie wants a turn sometimes. So we now share the car. And, yes, I have to referee many times over whose turn it is to drive the car. I have broken up numerous fights and, some days, the car sits on the porch because everyone has lost the privilege of driving the car.

One day, after witnessing such an argument, my neighbor said that they had the same car in their shed that her two children no longer played with (incidentally, her 3-year old son was one of the children fighting over who got to drive the car - the same 3-year old who supposedly had no interest in said car anymore - the same 3-year old who was ignoring his mother's order to get out of the car because he did not want to give Clare her turn). She offered to bring the car down to our house - by her reasoning, we would be doing her a favor by taking a big "unwanted" toy off her hands and she would be doing us a favor with VOILA - two cars and no more fights. I itched to point out that maybe she should bring the car out for her own children to play with and then they would stop taking my kids' turn, but I held my tongue. Instead I thanked her for the offer, but that one car was more than enough for my children. They were fine sharing the car. It obviously was going to take some work, but what kind of message does that send - you can't share something? That's okay, we'll just get another one! I wanted to ask my neighbor what lesson I would be teaching my children by providing another car? How was that going to help them in the "real world?" The neighbor looked at me like I had two heads - she had supplied the perfect solution to my "problem" and I was turning her down. But that's just not the way we work in our family.

I'm not perfect, and my parenting isn't perfect, but I like to think that I am raising my children to be better than what our society believes they can be. That the bottom line is not about always being happy, doing what feels best for us, and having whatever we want. That it's not breaking any child labor laws to have an older child help out with the care of a younger child. That when we cross the street, Jamie is responsible for holding Simon's hand, while I take Clare's and push Violet in the stroller. That we pitch in, help out, and, yes, even share - that's the way we are a family.

Saturday, August 01, 2009

Follow-Up

Clare had her follow-up ultrasound scan with the Big Cahuna yesterday at Children's. The glue is holding and doing its job. Her blood flow through the radial artery looks great and completely normal, and she has plenty of flow down to her hand and fingers. The aneurysm is still there, but it's only been a couple weeks since Clare's procedure. She will come back to have another scan in a year to do another check of the aneurysm, unless it becomes a problem beforehand. The doctor does not feel it will be a problem and that it will eventually clear up on its own now that the fistula is repaired.

As for me, my CT scan showed that I have some structural abnormalities in my right kidney that is causing my pain and discomfort. I am going into the hospital tomorrow for a more invasive test, and if the test confirms the urologist's diagnosis, then I will need kidney surgery. I am trying not to freak out about surgery yet until I know for sure. I won't know the results of my test for another couple of weeks, so my biggest concern right now is that I have to stop breastfeeding Violet for 24-48 hours post-test. Lots of pumping and bottle-washing, here we come!

Wednesday, July 22, 2009

Need to Stay Healthy

Clare is almost back to normal. Her rash is 95% gone (one week later!) and the itching is almost gone, too. She had moments when she scratched herself so much she would bleed. Our fabulous cardiac nurse at Children's is on the hunt for the anesthesia records to find out exactly what medications Clare received, so we can red flag those for the future. I think the rash was the worst part of recovery!

Clare's left wrist is still very bruised from the angio-embolization, as is her groin. In her wrist, she has a hard lump where the glue is in her vein. The Big Cahuna said that, over time, the glue will dissolve. By then, the vein will have shut down because of the occlusion. Clare goes back next Friday for a follow-up with the Big Cahuna to make sure that the glue is working. You can't feel the thrill in her pulse anymore, so I have to think it is working. Other than that, the only other noticeable recovery is that Clare is still working the anesthesia out of her body. Her muscles are floppier than usual, especially her upper body. When I pick her up under the arms, there is almost no resistance. Many times, my hands just slide right up her arms and I almost drop her - there is so little resistance, she cannot even hold her trunk muscles tight enough (like a 30-pound newborn!). I have been doing a funny "under-the-butt-first" pick-up, if she needs to be carried up the stairs or in and out of her car seat or dinner chair. I am afraid I am going to pull her arms out of her sockets! The increased floppiness means that Clare has to work harder to do anything, so she is exhausted by lunchtime. Especially since she is back in school four days a week. She had two therapies in school today and we got the brunt of that for the rest of the day. I wish she would nap! The best I can do is have her settle down for a movie, read books on the couch, and do other quiet things, like painting race cars that we can assemble tomorrow. It is very frustrating because I know she needs to nap, but try reasoning with a four-year old over that.

Since Clare is on the mend, I now have some sort of kidney obstruction. (Maybe that's one of the rules about a large family - all of us cannot be healthy at the same time.) After a few days of a new pain in my lower back and other symptoms, I had an ultrasound done this week that showed my right kidney is distended, most likely due to some blockage or infection. I am on antibiotics, but it is becoming increasingly painful, so I am going in for a CT scan tomorrow. I am praying that they find something on the scan. If not, I will be encouraged to undergo a more invasive test that involves an isotope injection. If I do this test, I will not be able to breastfeed Violet for 24 hours. I also cannot take any of the medications the urologist wanted to prescribe to soothe my enlarged kidney because of breastfeeding. So it's been a tough few days and I am trying to figure out what to do. Right now, I am pumping for the first time in six months to bank some breastmilk in case the urologist does want me to do the second test. This is where breastfeeding gets tricky - trying to balance my own health and comfort against my baby's. Right now, I can handle the pain, but I am a little worried about what comes next.

Thursday, July 16, 2009

Home Again

We arrived home with Clare this afternoon a little after 2pm. She has been in great spirits, but still has the rash all over her body which is now itching. She is like a little bear all over the house - rubbing her back up and down on the carpet, shifting from side to side in her chair at dinner, sticking her hand down her pull-up - all in the attempt to calm that furious itch! Before we left Children's today, I talked with a doctor from the anesthesiology department. They are going to flag Clare's file and compare the medications used in her anesthesia from this visit against her past visits and determine if they used anything new. The consensus is that Clare is having an allergic reaction to one of the anesthesia meds. She also spiked another fever this afternoon, which the cardiologist feels is just a reaction to the glue, being an artificial substance in her body. So we filled her up with Tylenol and Benadryl and put her to bed. We are all ready for a good night's sleep. Thank you again to everyone for all their prayers and well-wishes! We all made it through another one.

A New Day

I just got off the phone with Shawn, and Clare Bear is feeling much better. She woke him up at 4:30 this morning with, "Daddy, I feel better!" Her fever is gone and her heart rate is back in the 120s. She is still a little puffy and has the rash, but the doctors are pretty convinced it is a reaction to something in the anesthesia and not a fluid build-up. Shawn said her rash looks more pink now than flaming red, so it is improving. Clare was eating a little breakfast when I called, so if she keeps that down, she will probably be discharged today.

I am going to take Jamie to his allergy shots this morning then head back to Children's. Hopefully to bring Clare back home with me! (Oh, yeah, and Shawn, too!)

Wednesday, July 15, 2009

Successful but Sick

The best news is that the procedures were considered successful. However, they were also incredibly long and Clare ended up under anesthesia for six hours. Other than her open heart surgery, I think this is her longest time under anesthesia so far. So now she is pretty sick from post-anesthesia "complications." Fever, high heart rate, vomiting, unexplained rash over her face, trunk, and back, and fluid build-up. When I left the hospital at 8pm, she was starting to fall asleep. She is still receiving IV fluids since she is unable to keep any water down. She is being treated for her fever, and the nurse was waiting for the pharmacy to send up Benadryl (for the rash) and Lasix (for the fluid). The plan tonight is to treat her various symptoms, keep her as comfortable as possible, and see how she is feeling in the morning. Everyone expects Clare to be much-improved by then and, if she is, she can come home tomorrow.

I am not going to go into tons of details because it is probably boring to most people and I am exhausted, but the frenulectomy was successful in that it was done quickly and with no bleeding. We will not know if it makes a difference until Clare is back in school and working with her speech therapists. The embolization was also successful and the fistula is now closed. The interventional radiologist was able to save her radial artery and just use glue to close off the vein (the vein is not as important as the artery since there are only two arteries in the arm, the ulna artery and the radial artery, but there are numerous veins - here is your anatomy lesson for the day!). The aneurysm was not repaired - because of its placing, it would be very complicated to get to it and, right now, it is not making an impact on her hemodynamically (my dad was impressed I knew that big word - basically the aneurysm is not interfering with blood flow or causing added stress on Clare's heart, like the fistula was). Clare will return to IR in two weeks for another ultrasound scan to be sure the fistula is still closed and blood flow has returned to normal. Then we will just have to keep an eye on her aneurysm periodically to see if it ever develops into something more serious.

All in all, we are very happy with the outcome of today, but pray that Clare gets over the anesthesia effects quickly and can come home tomorrow. We all miss our sweet little girl!

The Waiting Game

I dislike the waiting part of the day almost as much as I dislike soothing the increasingly cranky 4-year old who at Day 2 has already proclaimed she is "all done" with the hospital.

So far this morning has gone off without a hitch. It was a fight to get Clare to take her normal morning meds, so the anesthesiologist gave her Versed (the mellow drug) through her IV instead of orally. (Amy - I totally understand now when you said Avery would just lose it if anyone came near her.) Clare is definitely at her limit with being poked, prodded, stuck, and wired up. We met with the team of doctors and nurses this morning, and the Big Cahuna went over the procedure and even drew a neat little diagram on the dry erase board for us. Depending on what they find when they actually enter Clare's vessels, the procedure may take anywhere from 3-6 hours. So we have some LONG waiting ahead of us. They are going to access the vessels through her groin and put in an arterial monitoring line as well (which I am not crazy about because that is what originally caused this whole mess in the first place almost four years ago!). Some things are still undecided such as how they are going to close off the vessels, whether they can save the radial artery, whether Clare will need a blood transfusion, yada yada yada. So we're just going to wait, wait, wait, and see. We are not allowed to stay with Clare when she is prepped and intubated, so we said our good-byes as they wheeled her away. She was extremely mellow at that point.

Thank you for all the thoughts and prayers this morning. I keep thinking that this is going to get easier some day, but the huge pit in my stomach always comes back as we prepared to hand our little princess over. In the words of our current hospital-expert Amy, "Prepare to be unprepared."

Tuesday, July 14, 2009

Going to Bed Now

Last update of the night - General anesthesia and interventional radiology will just see us in the morning. Lovely. The one big downer of this whole thing (not counting the fact that we're here in the first place) is that with four different departments involved, it's a lot of hoopla just to figure something out. Logistically, Clare's caths go so much smoother because only cardiology is involved. Now we're dealing with cardiology, general anesthesia, general surgery, and IR, so it gets very complicated with who's doing what and who's going where.

We met with the cardiologist tonight who went over the brief amount of information he knew regarding what was going on tomorrow. I have to say that he, his top nurse, and the general surgeon have been fabulous in nailing down these IR people to get this thing done. If it wasn't for them, we would still be in fistula-limbo. (Not sure what that means but it does not sound like a pretty place to be.) The doctors are fascinated by Clare's fistula (it's a rare occurrence in a 4-year old) and everyone wants to feel the thrill and listen to it. One of the doctors even let Shawn and I listen to it with her stethoscope. Not as exciting to us as it was to her, but interesting, I guess.

We also found out that Clare is on for the frenulectomy as well. The general surgeon will come in right at the beginning of anesthesia and clip that tongue once and for all! Hooray! That means that, not only will Clare finally have this done after four years of waiting for the right time, but she won't have to undergo anesthesia a second time in the process.

The IV finally went in around 8:30pm and was every bit as traumatic as I expected. They wrapped Clare tightly in a blanket so she wouldn't kick or flail her other arm. She screamed like a banshee and kept begging me, "Help me, Mama!" It breaks my heart, but all I can do is keep calm and stroke her hair and promise to pick her up when it's all done. Thankfully, the IV nurse made it a one-stick deal. A prize of Mickey Mouse checkers brought a tiny smile to Clare's tear-streaked face when it was done. Shawn was going to lay down with Clare in the hospital bed, put on a movie, and hope she falls asleep quickly. At midnight, the plan is to start her IV fluids so she is well-hydrated in the morning.

Violet and I are in the hotel for the night and ready for sleep. (Violet already beat me there.) I am heading back to the hospital at 7am because Clare will be taken in for anesthesia around 7:30. I will try to update as I can, but we really have no idea what to expect tomorrow. We are just praying for the very best!

More Fun Pics





























We're still just waiting so there is nothing else to do but take pictures and post them!
(And I am glad that Clare is smiling now because she won't be once the IV goes in.)
Addendum: So I have to explain some of the photos because Clare was a riot today at the hospital. The top photo is her in her princess nightgown riding around the cardiac floor in the evening. She is such the little charmer. Shawn pulled her around the floor, and she waved at everyone. Practicing for when she is Miss America or something!
The photo of Clare in the bed talking on the phone - it is a play cell phone that she insisted on bringing to the hospital. She would "talk" on it frequently throughout the day. The cardiac floor is a strict no cell-phone floor because of all the equipment, so once you hit the elevators, everyone whips out their cell phones and turns them on, including Shawn and I. And including Clare. As soon as we got to the elevators, Clare would open her pink cell phone as well and start talking.
The last photo is Clare putting hospital bracelets on her stuffed animals. The hospital bracelets are printed on a sheet and come with five ID bracelets and a bunch of labels. Clare's nurse Kathy (awesome lady!) let Clare keep the rest of the bracelets, so Clare put one on each of the pink stuffed animals she brought with her. (Pink is the new favorite color in our house.)

Pre-Op Fun


Oh, the hospital life ain't the life for me!

My goodness - we are told to show up at noon for admittance and pre-op. It is now 7:00pm - Clare has been weighed and measured, an EKG done, and we met with the cardiac anesthesiologist. Seven hours and that is all that has been accomplished so far!! We still have not met with the interventional radiologist, cardiologist, or general anesthesia. Plus the dreaded IV and blood work has not been done yet. But, in the meantime, Clare has had a blast - riding the halls in a little car, painting in the activity room, playing on the hidden playground, splashing in the garden fountains, watching movies, and being served pudding, cheese puffs, and chocolate milk while lounging in bed.

Hopefully the IV will be inserted and blood work drawn before it gets too late, so Clare can go to bed. We do know that Clare's case starts at 8:30am, she will be on fluids via IV and off oral food and drink around midnight, and she will be intubated (on a breathing tube) while under anesthesia. We do not know how long the procedure will be (1-3 hours possibly), what kind of recovery Clare is facing, or even how exactly the procedure will go. The cardiac anesthesiologist (who will not be part of the actual case tomorrow, but has to consult on the anesthesia involved because Clare is a cardiac patient) explained that many of the decisions regarding the case will be made tomorrow once she is in interventional radiology - like whether they will use coil or glue to occlude the vessels or how they even gain access to the site of the fistula (through an artery in the wrist or in the groin).

These are photos of Clare enjoying her pre-op day (at least someone did!). She loved the $12 balloon Daddy bought for her... until it broke its string outside and floated up into the trees. So if you're ever in Prouty Garden at Children's Hospital, you may find that balloon stuck at the top of the trees.






















Monday, July 13, 2009

Tomorrow

We head down to the hospital tomorrow so Clare can do her pre-op and be admitted for surgery on Wednesday. Not technically surgery - it is a catheter embolization, but surgery is easier to say.

As we get ready for our hospital stay, my thoughts tonight are with two of our friends from our WS-community, Avery and her mom Amy. Avery is one month older than Clare and is undergoing surgery tomorrow morning to have a pacemaker put in. We are sending loads of prayers their way tonight and tomorrow for a successful surgery and that the pacemaker does its work and Avery can get back to being that amazing, sweet, equally-crazy-curly-haired girl that she is!

Thursday, July 09, 2009

Weird

Despite...

... being up a good part of the night with a teething Violet
... finding the perfect exercise outfit only to have Violet grab my bowl of granola and milk and spill it all over me
... getting four children fed and dressed and out the door in time to drop Clare off on time at morning summer school
... going to the allergist so Jamie can receive his sixth round of weekly allergy shots and keeping the kids entertained while we wait quietly in the doctor's office for 30 minutes to be sure he does not have a reaction
... having Simon fall off the curb and cut his lip open

... I was so proud of myself that I actually made it to the gym this morning. Only to have the guy next to me jogging on his treadmill BACKWARDS. Come on? Really? Backwards? Hey, it was an accomplishment I was just walking forward.

Wednesday, July 08, 2009

Familiar Rhythm

As we start our countdown of less than a week until we return to Children's Hospital for a three-day stay, it amazes me how easy it is to slip back into the routine. The routine of mental and physical preparedness for our stay. It has been almost two years since Clare was at Children's for a procedure. That alone amazes me! I feel as if we are finally on the path of Clare outgrowing her pulmonary stenosis. Her cardiologist always told us it would happen one day, but I never truly believed her. It's hard to see that as even a possibility when faced with the harsh reality of cath after cath, as we were in Clare's first year. And just when I had a glimmer of hope and Clare was able to go 15 months between caths - BAM - she had two more back-to-back. But it's been 22 months since her last cath, and she does not return to the cardiologist until... I can't remember now which month she has to go back. That is progress!

The downside to not being in the hospital as frequently is that I do not know what to expect out of this hospital stay. Since I always seem to have a nursing baby these last few years (and that nursing baby is NOT Clare anymore!), Shawn is the parent who will stay with Clare overnight. Violet and I will be with them all day Tuesday, then stay in a hotel down the street from the hospital that night, so we can be there almost all day Wednesday as well. As long as the procedure goes well, though, I will head home Wednesday night to be with Jamie and Simon again. Clare was 2 1/2 years old that last time she was admitted at Children's. Now she is over 4 years old, and I have a feeling that there will be much trauma involved. She has reached the age where she knows what's coming (as in nurses with needles), and the anxiety over any procedure (blood draw, IV stick, x-rays, echo) is worse than the actual procedure. I am already preparing myself that the worst moment in terms of Clare meltdowns will be when they insert her initial IV. And I know the worst moment as a mother will be when the doctors take Clare away from us. That's how prepared I am at the moment. And, of course, I know that you are truly never prepared for any of it.

Tuesday, July 07, 2009

A Date

We finally have a date for Clare's procedure! She will undergo a catheter embolization of her A-V fistula on July 15. This will be done in Interventional Radiology at Children's Hospital. We were able to easily convince the general surgeon of the seriousness of Clare being well-hydrated before undergoing anesthesia. They are going to admit her the night before so she can have fluids via an IV when she is cut off food or drink. Score a HUGE point for us! Her cardiologist wants her to remain overnight after the procedure on the cardiac floor for monitoring, so we are looking at a minimum of a three-day stay at the hospital. I will just be so happy to have this done with!

Monday, July 06, 2009

Photos Photos Photos


I finally got around to updating Jamie's, Clare's, and Simon's yearly photos last week. (I did take Violet for solo photos last month, so she just got in on the group shot this time.) I tried a new photographer at a new studio and LOVED IT! The only photos I were not 100% thrilled with were Simon's and that was because Simon has declared for the past few months that he does not partake in photo sessions. (I have Easter and cousin group shots to prove it!) But his photos are still awesome. Enjoy!

My Kids Rock!







Love It!







Wednesday, June 24, 2009

The Runaround

I am going to preface this post by warning one and all that I am not in a good mood. It's most definitely been one of those days. After enduring three weeks with a temporary crown on one of my teeth (read - three weeks of eating on only the right side of my mouth), I finally had my permanent crown put on this afternoon. Unfortunately the crown is a bit of a tight fit, resulting in the dentist and the hygienist attempting to yank yards of floss between my molars with little success. I am not sure why they needed to floss my teeth, but I was not in a position to ask questions (mouth wide open, blood dribbling down my chin). So after breaking floss string after floss string, the dentist warned me that my gums "might be a little sore" tonight. One of the understatements of the year.

Today was the day we met with the general surgeon who was going to repair Clare's fistula. (Note the use of the verb WAS. Was was was was was.) We endured over two hours of driving hell down to Boston (we live about an hour from Boston) with four grumpy children we had to wake up and load into the car, enticing them with promises of Dunkin Donuts. Even though we gave ourselves an extra hour of travel time, due to construction traffic (thank you, President Obama) we still arrived 15 minutes late for our appointment. We had been forewarned that the surgeon was "squeezing" us in today since he does not have an appointment opening until the end of July. Wednesday is his day for meetings, so he agreed to meet with us between meetings. Shawn and I were both stressed about being late (my nightmare was that he would be unable to meet with us after that torturous drive to the hospital), but the surgeon was actually very understanding about us being late. Given that he himself made us wait another 30 minutes past when we arrived. This is now the fifth doctor we have met with concerning Clare's fistula.

So here's the recap for those who cannot remember in detail each of my posts:
April 1 - ER doctor first notices the thrum in Clare's wrist.
April 3 - Clare's cardiologist examines Clare and determines that she does indeed have an AV fistula in her left wrist. Decides on a "wait and see" approach.
April 7 - A second cardiologist disagrees with the first cardiologist's approach and decides to send us down to Children's Hospital to meet with a surgeon about undergoing surgery.
April 14 - Meet with the cardiovascular surgeon and Clare undergoes ultrasound scans on her arms. The surgeon decides this would be better addressed by Interventional Radiology and refers us to them.
April 17 - More scans done at Children's and Clare is seen by the interventional radiologist. He says "yes, indeed, I can fix this!" (Okay, I am paraphrasing.) He does not know, however, what method he will use.
April 23 - IR calls to schedule the "procedure," but that is the only information the woman has. We refuse to schedule anything without knowing what Clare is undergoing, so she promises to get back to us.
April 27 - We find out Clare will undergo a catheter embolization of the blood vessels. The IR schedule is full until July and the July schedule is not available yet.
June 11 - After waiting more than a month and hearing nothing, I track down the cardiology nurse. She finds out that IR is unable to fit Clare in before the fall, so cardiology has decided to send Clare back to a surgeon (this time a general surgeon) so she can have this repair done in July.
And back to today....

The surgeon did not say these words, but Shawn and I had the impression that he thought surgery on Clare's wrist was overkill and unnecessary. According to him, it is a procedure best addressed in Interventional Radiology. He was going to pull his magic strings and get her on the July schedule. He literally told us to "wait right here" and he would go talk to IR. Upon his return, he told us that they could fit Clare in on Friday. FRIDAY???!!!?? She would have to be admitted tomorrow for pre-op as everyone agrees that Clare needs overnight hydration via IV before undergoing anesthesia. After all my complaining about this taking too long, Friday was just not an option. Logistically, we cannot coordinate our life with so little notice without going insane. Obviously, in an emergency situation, we would manage somehow. (And, very important in our family dynamics, is that this weekend is Shawn and Jamie's annual Father-Son Camping trip with our church, which would have to be cancelled.) But the surgeon agreed this is a priority, not an emergency. (He really seemed like a great guy, we are just exhausted from the never-ending doctor shuttle.) Soooooo.... it's back to waiting for IR to get back to us with a date. The surgeon pretty much guaranteed it would be in July, so I am praying he really can pull those strings of his.

A ridiculously long post with very little information. I know, I know, quit my whining. We could be headed back to Boston tomorrow and have this thing done with. In this four-year journey, though, I have learned many, many things. There will be things I cannot change. Things I cannot fight against. Things I just have to accept. And one of those things is that there will be times where I have to choose between two sh#$%tty options. This is definitely one of those times.

Friday, June 12, 2009

A Day With Clare

Shawn took Jamie and Simon to his mom's house for the day. Since Clare had school, she stayed home with Violet and I. Having four children, I understandably have to divide my time and attention between them. There is always compromise on what we do during the day, depending on everyone's desires. Other than sleeping and eating when she wants to, Violet is fairly easy-going right now, so I thought it would be a rare day to let Clare do what she wanted all day when she wanted to (within reason!). It was a fun day and a great opportunity to see what Clare enjoyed doing.

Before school, we ate toaster strudels together for breakfast, then blew bubbles. After soaking the living room carpet with bubbles, we watched Mickey Mouse Clubhouse (and I took a quick shower during the second half), got dressed, and did our hair. Clare played with her bucket of ribbons and barrettes for about 15 minutes. This is something she asks to do almost every morning, but I usually say no because it means there are about a hundred tiny items everywhere that I have to pick up after. But today was a day for saying yes. Then it was off to school. While Clare was at school, I did my housekeeping chores, so I wouldn't have to do it after I picked Clare up.

After school, Clare wanted to go to the grocery store to get a cookie and a piece of cheese (two free things they offer at our grocery store), which worked perfectly in my plans since I needed to go anyway. When we came home, Clare wanted to play outside. She moved firewood from the side of the shed to the side of the porch. In doing this, she discovered one log full of slugs. Not my choice of a girls' day activity, but Clare wanted to play with her new friends. (I just watched - there is a limit to how much sliminess I can touch!) By the time she was done, I am not sure if her friends survived the playdate - it was hard to tell what was dirt and what was slug slime (or body parts?) on her hands.

Time for hand-washing, which Clare stretched into a 20-minute activity. (Again something I rarely allow her to do - play in the bathroom sink to her heart's content with the water, soap, and lotion.) Then a late lunch of ham and cheese and bananas. (Since someone was full earlier from the free stuff she ate at the grocery store - cookie, cheese slice, small cup of Whoppers, and two Hershey Kisses. I did put my foot down on the Ben & Jerry's ice cream - enough sweets! Apparently Friday at noon is THE time for free samples.) During lunch, I received my Tastefully Simple order (and felt good for helping support Williams syndrome by ordering too much yummy food!), so Clare and I delved into the box after lunch and examined each item in detail and made towers out of the boxes and bottles. She loves to open packages, but the majority of our UPS drop-offs are defibrillators for Shawn, so she is not allowed in on that fun.

And now we're off to meet Shawn and the boys at the beach for the rest of the afternoon and evening. The rain looks like it may hold off for a little while and the sun has popped out. You may be bored by our run-down of the day, but I loved every minute of it. It was one of those perfect days. I don't regret having four children in the least and the demands on my time and attention, but it was amazing how much I learned about one child when I spend hours with just them (okay, and the baby, but she was a very cooperative third wheel!).