Wednesday, December 14, 2011

Six Months of Sweetness

Eliza is six months old today!

It has been a whirlwind of a six months, and I cannot believe my baby is halfway through her first year. Eliza is such a bundle of sweetness in our lives. I have had a couple "high-maintenance" babies, and Eliza is anything but. She is so mellow. She rarely cries, so when she does, we all sort of freak out! She is such an easy-going girl and goes along with whatever we have planned for our day. All babies are a blessing, but I admit I am glad to have a baby who is low-key at this phase in our life.

All the children are as infatuated with her as the day she was born. The boys fight over who gets to push Eliza's stroller up the hill when we pick Clare up from school. Simon and Clare ask first thing in the morning to sit and hold her. Jamie's favorite job is to put Eliza into her pajamas at bedtime (he even changes her diaper, if it's not dirty!). And Violet exclaims "Hello, baby!" when she sees Eliza.

It does not matter how many kids you have - it is always thrilling to watch them grow and achieve their milestones. Eliza is working very hard on sitting up for longer periods of time (I still hold out hope that she'll be sitting at Christmas), and I am eager to watch her over the next six months as she learns new skills.

Happy six-month birthday, Eliza Marie!

Monday, December 05, 2011

Looking Up

Things are slowly getting back to normal in our house. Our kitchen is 100% functional again. There are some minor details we need the contractor to take care of (such as my kitchen sprayer hose only comes out about a foot), but I will not complain. I WILL NOT COMPLAIN! After being upside-down and inside-out for nine weeks, I WILL NOT COMPLAIN! Our basement playroom is almost there. I am still looking forward to the day when there are no more people in my house making messes, though! Hopefully in the next few days everything will get wrapped up, I will be able to unpack the boxes from my kitchen cabinets, and the contractors will move their tools and garbage out of the garage. (The contractors have been using my garage bay to store everything. For weeks it held our Corian countertop, side cabinets, and other items. I was using Shawn's bay for our van, but after last week's incident, I determined all would be better if I just parked the rental van in the driveway. It's a little tricky getting in and out of Shawn's bay with the van because of the curve of our retaining wall. However, after scraping ice off my parked-in-the-driveway car this morning and having to bundle everyone up just to walk to the car to drop Jamie off at school, I pushed - because it was all too big to lift - everything from my bay of the garage to Shawn's. I mean everything - bags of garbage, garbage cans, boxes, air scrubber, table saw, snowblower, humongous box holding our old dishwasher, everything. I was desperate! After one winter of having a garage, I am spoiled by it now.)

My van is still in the shop, and it hasn't even been started on yet. The big ice storm at Halloween put such a backlog on all the repair shops (at least this is the story they gave me!) that it will probably be another couple of weeks before we get our van back. This is irritating and inconvenient (our family of seven doesn't quite fit the greatest in our rental van, and I hope we don't have to make any of our Christmas trips in it), but this is a time where I feel like I have to swallow the pill I've been given without complaining because it was me who put us in this position.

Our house is decorated for Christmas - the tree is up, lights twinkling in and out, and we set up our New England village throughout the first floor. It is such a peaceful time at the end of the day to sit in the darkened living room and enjoy the beauty of the Christmas lights. It is one of my favorite things about the Advent season. Our shopping is done, so our evenings and weekends can be spent enjoying Christmas concerts, school parties, Jamie's futsal games (form of indoor soccer), our Advent wreath, outdoor Nativity walk, cookie swaps, Williams syndrome Christmas party, Make-A-Wish Christmas party (where the photo was taken - they had a fun photo booth Clare and I tried out), Clare's ballet recital, drinking eggnog, and driving around looking at lights.

And I finally met a kindred spirit at Clare's school! I have felt so much like I was on-the-sidelines for the year-plus Clare has been at her school. Never quite fitting in with the other parents because the path I walk with my child is so different from theirs. However, when you're standing around after school watching your children play on the school playground with an AED (which is another story for another day!) at your feet, you're bound to draw someone's attention. Which I did, and I am so glad for it!

Monday, November 21, 2011

Focus

I ripped the slider door off my minivan this morning coming out of the garage. Yup, ripped it right off, throwing the van door back into the garage where Jamie, Simon, and Clare were standing, shattering the back window, and showering Violet with glass. Our guardian angels were definitely watching out for us this morning because the huge, heavy door landed about a foot away from the kids, and Violet was scared, but unharmed. We were running late, I was fuming at the bickering kids who were all very unhelpful this morning in getting out of the house on time (Shawn being away on business), and I (obviously!) misjudged my clearance pulling out of the garage with the sliding door still open. It was not a pretty sight.

Almost four hours post-incident, I am still irked at myself that it happened at all. I am NOT that kind of person - distracted, irrational, fly-by-the-seat-of-my-pants, making rash judgements. But I was that kind of person this morning, and now I have my mess to clean up for it. It really put my life at this moment in focus. We're in a crazy place right now with our life. (Wait, you have five kids - isn't it all crazy?) Actually, it's not always crazy. Like every family, we have our moments of chaos, meltdowns, temper tantrums, and toys everywhere. But we also have our structure, routine, priorities, and our focus on what's important. And that keeps us running smoothly. Usually.

We had a dishwasher leak eight weeks ago that led to a huge mold problem in our kitchen and basement. Since then, we've had remediation companies come in to clean the mold, our kitchen and half the basement playroom gutted, and now are on the tail end of everything being reconstructed. My kitchen is either packed away in boxes in the garage or in my dining room (which is where my stove, dishwasher, and fridge currently reside). We have nowhere to eat, I cannot access my mudroom or garage (which means dirty shoes in and out of the living room), and my house is filled with strangers making messes. When my house is in chaos, I am in chaos. I want things organized, in their place, and clean. And, right now, my house is anything but so I am anything but!

Add to that, I also feel as if we go through cycles when it comes to Clare and what's going on with her. Right now, there seems to be so much going on. We are dealing with issues with her kidneys, muscle pain in her legs and feet, exercises for her mouth because her tongue is weak, home stretching program, limiting certain items in her diet while adding increased fluids. And that doesn't even touch on what it takes to help her through her school assignments. In addition to the services she receives in school, she has three private therapies after school. So three days a week, I pick the kids up from school, and we all go to some sort of therapy and arrive home at dinnertime. Last year, Clare did her one private therapy in the early afternoon since she had morning kindergarten. I (naively) thought this year would be easier for so many reasons (two kids in full-day school, Simon in a preschool closer to home, two little ones that nap in the afternoon), but, in many ways, I feel as if we are on overload as a family. And I am at a loss what needs to be done about this. Clare needs her therapies. There are times when I wish we were doing more for her. As it is, there are so many different exercises, stretches, lessons I should be doing daily that sometimes don't get done. Where do we draw the line? I don't want to cut out things that she needs, but I have four other children and my sanity to think of. This morning's incident was a wake-up call that I am so much on overload most of the time, I am not making good decisions. I am not taking the time to process and think things through (such as let's pull out of the garage first with the sliding door open, then I will get Simon's car seat and put it in the car, then load up the kids). That didn't work out so well!

This morning's trauma also made me realize how blessed we are with such good friends. We do not live near any of our family, so I can't call my mom or sister to come help me out in a pinch. I have never been the type of person to have a wealth of friends (being slightly on the introverted side at times). There are limited amounts of people that I can ask for help. But, this morning, I saw that there is just enough. That God always provides. Simon, Clare, and Jamie each go to a different school, and three good friends were able to rearrange their schedules and put up with some inconvenience (like crying 2-year olds who didn't want to be in the car!) to pick up each of my children and bring them to and from school today. That made my day so much more manageable to deal with my mess with only the two little one who still nap.

As we approach Thanksgiving and enter the Advent season this weekend, my focus is on my family, preparing my heart for Jesus' birth, and the blessings in my life. I am going to try to let go of the craziness and busy-ness that has consumed me lately. Even though I do not have a kitchen, I do not have my car, and I have a lot on my mind when it comes to Clare, I want to focus on the three things that are truly important to our lives - faith, family, and friends. May this Advent season keep me in that spirit.

(So this is from Monday, but I couldn't get Blogger to publish until today!)

Tuesday, November 15, 2011

Make-A-Wish

A few weeks ago, the Wish Granters from Make-A-Wish came to our home to meet Clare and talk to her about making a wish.

Make-A-Wish is something I have thought about on and off for a couple years. I was unsure whether Clare even qualified for Make-A-Wish, but, if she did, I wondered whether that was something we should nominate her for. Part of me felt like this was not right for us because Clare does not have cancer (which is what I am sure most people associate Make-A-Wish with, as I did), she is currently stable heart-wise, and I just didn't want to "take advantage of the system." Then we heard about WS-friends of ours getting ready to have their wish fulfilled and others being nominated for Make-A-Wish. The little voice in my head would wonder again about it. Then her cardiologist told us that Clare needs another catheterization in the next few months. Then the nephrologist diagnosed her with calcifications in her kidneys and hypercalcemia, and we discussed other scary topics such as renal failure. And over the past several months, Clare has been suffering pain in her lower legs and feet. So we've been doing x-rays, visits with the orthopedic surgeon, private physical therapy, and fittings for foot orthotics. If any child deserves having a wish granted, I truly believe Clare is one of those children.

Clare was nominated, she met all the qualifications, and the Wish Granters paid us a visit. Clare was eager for their visit and knew immediately what her wish would be. Ahead of time, they informed us that they would need some back-up wishes in case they could not fulfill Clare's top wish, so we did talk to Clare about it.

Top three wishes:
1 - To meet a princess.
2 - To meet Jesus.
3 - To visit Planet Earth.

The Wish Granters assured us that they will be granting Wish #1! A trip to Disney for our entire family is now in the works. It was very important to Clare that she goes on her trip when she can go swimming, so we won't be going to Orlando until sometime next spring. But we're obviously all so excited. For a couple years now, Shawn and I have wanted to take Clare to Disney to see a "real" princess (and give that experience to all our children), but we just have not been able to do it financially. It is still surreal that we will actually be going and seeing our princess' wish fulfilled.

Monday, October 24, 2011

Eliza at Four Months Old

Eliza is now four months old! She really is the easiest baby I've ever had. (Finally got it figured out by Number Five!) She is very mellow, rarely cries (so when she does, everyone goes on super-alert), and sleeps like a champ at night. She has the same big blue eyes as her older sister Violet, but her hair is darker like Clare's. At her four-month pediatrician appointment, she weighed over 15 pounds - more than what Clare weighed at a year old - and Eliza has all the delicious rolls to prove it. We all are so in love with our sweet baby girl!

Tuesday, October 04, 2011

Under Our Belt

We now have one month of school under our belt. Jamie is enjoying third grade so far, although the amount of homework has increased, which is an adjustment for all involved. I am definitely of the opinion that school and homework come first, but I admit it is tough to squeeze it in on those days we are also juggling one of Clare's after-school therapies and Jamie's evening soccer practices. There are a couple days during the week where homework is done somewhere other than home! But Jamie is an avid student and a hard worker. He landed a speaking role in the school play (Pinocchio), and Shawn is going to help out with some set-building this year.

Simon started at a new preschool this year. It is a school that is closer to home, and he entered school knowing two children (from our church) in his class. So he is very happy with the change and loves his school. Simon would go to school every day if he could! One day a week, he stays at school for a full-day and has such a great time. He asks me every morning if this is the day he "gets to eat lunch at school." I know most young kids love school (it's only when they get older that starts to wane!), but I always loved school. (Yes, even high school.) I hope my children always love school, too. There will be good days and bad days, but I want them to always wake up eager to see what the day will bring.

Clare has taken to her new school schedule better than we expected. There are days she is tired, and, by the end of the week, she is exhausted, but we all are! But there has only been one day where she came home exhausted to the point of almost not being able to function, and that was on fire drill day. She was so set off from the fire drill all day that both her kindergarten and first grade teachers told me it was a "rough day." Other than that, Clare has adapted very well to going to school all day. She loves eating lunch at school and now orders hot lunch a few times a month, which is even more exciting to her! So exciting that she ordered it on a day she was not supposed to because I knew she would not like it and I had packed her a lunch. She ended up not eating lunch at all because she didn't bring her lunchbox to the cafeteria and didn't like the hot lunch. (Told you so!) Now we have a simple note-system worked out with her aide, so Clare only orders hot lunch on the days I can guarantee she will eat it. But she loves eating with her friends and her favorite part of the school day is that she often gets two recesses (one in the morning with kindergarten and then the after-lunch recess with first grade). The best of both worlds!

Clare had her nephrology follow-up last week - kidney ultrasound and visit with the pediatric nephrologist. The calcifications in her kidneys looked the same (not increased, which is good). The nephrologist is still hopeful that Clare's kidneys will grow without the calcifications growing, so she will eventually have more good tissue than bad tissue. We continue to monitor her calcium and sodium intake, but now are under orders to increase her water consumption to 2 liters (or 60 ounces) a day! That is a lot to get into a 6-year old who does not drink very often. Her recent calcium levels in her urine were high as well, so we are prepping for some follow-up tests (including a 24-hour urine study) to determine whether Clare needs to go on medication as well. The doctor again stressed the importance of water, water, water to filter through those kidneys. Clare's aide in school has been great in getting Clare to drink more water at school (and patient with the increased bathroom trips), and we have upped our efforts at home, too. Hopefully we'll see some improvement in her numbers when she has her 24-hour study done.

Our last appointment on the checklist is orthopedics next month. Then we're set (hopefully) until her next nail-biting cardiology work-up (in which we will discuss scheduling her cath). We have some other exciting things in the works for Clare (such as planning another trip to Kentucky to see Dr. Mervis in February). I know it's going to be a great school year!

Saturday, September 17, 2011

Fashionista

Violet is a mystery to me. At the ripe old age of 2 1/2, she loves to accessorize. And this girl can accessorize! I am not an accessory girl (quite the opposite!). I wouldn't call myself a tomboy exactly, but I don't like dressing up or wearing make-up or jewelry. We went to a pool party last month, and took Violet from her nap directly into the car. After the 40-minute drive to the party, when I went to get Violet out of the car, she was wearing a pearl necklace, pearl bracelet, and a crown. I am not sure where she had those stashed in the car, but she was ready for the party. It took a little convincing that pearls were not exactly swimwear!

From the time Violet could walk (and have free access to the house), she has adorned herself with baubles and bling. She wants to wear a dress or skirt every day (calls it her "princess"). I think we'll be in trouble the day she discovers make-up! (Or Clare introduces Violet to it.) In the age-old debate of nature versus nurture, Violet is proof that little girls are made this way. I certainly did not teach her this or model this behavior! Violet loves her little bit of glamor, and I love seeing what she comes up with next.

Saturday, September 03, 2011

One Day Down, 179 To Go

Clare had her first day of school yesterday. The day before, we went to the playground at Clare's school with friends. The teachers were busy getting their classrooms ready. While we were there, Clare's special education teacher from last year saw us sitting by the playground, so she came over. She shared with me the news that she was no longer the special education teacher for the school, but had her own second grade classroom instead. I was a little shocked. (This doesn't warrant a phone call over the summer to introduce us to the new special ed teacher? Apparently not.) So now the night before Clare begins school, I am worried that the new special ed teacher does not know Clare, does not know the IEP, does not know what is going on. And this is another big year for Clare since she is doing a transition year - morning kindergarten and afternoon first grade. Add in lunch, new IEP goals, and a new schedule. A schedule developed just for Clare, a rare occurrence in the school, and not something that will necessarily go smoothly in the beginning since there are so many people involved. And now a new special education teacher? So I was a little freaking out (to put it mildly).

That afternoon, I took Clare to her first grade orientation. I had 30 minutes in which I planned to meet her first grade teacher, chat with the new special education teacher, introduce myself to the new nurse (yet another new person on Clare's team since the old school nurse transferred), walk Clare through the lunchtime routine, and get information on the pick-up procedure. We met her new first grade teacher (super nice, very young, and enthusiastic), Clare saw some of her former classmates, and that was it. The 30 minutes were done, orientation was over, and we had to leave to pick up Jamie from school. So now I was a little more than just freaking out.

Clare, on the other hand, was counting down the days to her first day of school, especially since Jamie had started school the previous week. She was so excited the night before school started (and cried when we left her orientation because she wanted to stay). We packed her new pink backpack, planned her snack and lunch menu (and went over again and again that snack was for snack and lunch for lunch and never the two shall meet!), and gathered all her school supplies. She helped lay out her clothes for the morning, and Clare was ready. I am so grateful that Clare did not seem to have half the trepidation that I had about this new school year. I believe she was a little nervous when we first arrived at orientation because she wanted to hold my hand the whole time (not something she usually wants to do in a crowd - she usually wants to be out socializing, especially since she saw lots of friends). But she quickly overcame her nervousness once she saw her first grade classroom and got to sit at a desk. And now that the night before school starting was finally here, Clare was a bundle of eagerness for it all to begin.

Clare woke up at 5am (and I convinced her to lay down in the guest room for another hour before I was functional). Jamie did not have school yesterday, so the entire family was able to bring Clare to school. The joy on her sweet face was contagious. She just could not wait. Before school started, we were able to meet the new special education teacher, which eased a lot of my anxiety. We found out that Clare will have the same aide all day. I still want to meet with the nurse, but we're planning on setting up a team meeting in a couple weeks to review what's working and what's not. Even though we've been over the plan with Clare multiple times, I think she was a little confused that she was lining up with kindergarten again (especially since she saw her friends from last year going somewhere else), but she had a big hug for her kindergarten teacher. She waved eagerly at us from the line, and off she went.

The rest of our day was chock-full (it is always good to keep busy on days like this!). Simon had his preschool orientation that morning as well. I left Violet with Shawn (who was working from home), and took Simon to his school, along with Jamie and Eliza. Simon went home from orientation with a friend, so Jamie, Eliza, and I went out to lunch. I never get to go out with just Jamie (and Eliza slept the whole time, so she was a quiet third wheel), and we had a great time together. Then we came home, played Clue, woke Violet up from her nap, and it was time to pick up Clare.

The nerves came back walking up the sidewalk to the pick-up area. I know it was silly because what was done was done, but I just wanted my girl to have had a great first day. She had been looking forward to this day for weeks. Her class was one of the last classes out of the building, so after what seemed like forever, we finally saw the class. Clare was so tiny next to her classmates, and she did look tired. But she had a big smile on her face when she saw us, and we were greeted with huge hugs. We lingered to talk with the first grade teacher while Clare and her siblings went on the playground. Miss R said Clare had a fantastic day. She came into the first grade during circle time and transitioned beautifully, sitting down quietly and joining right in. Lunch went well, and Clare loved going to the library in the afternoon (which was the first grade special that day). Clare told us all about the library ("I even went to the bathroom in the library!"), but that was the extent of the information we got out of her. She was tired (and had a little cry when we told her it was time to leave the playground), but not the meltdown, non-functioning exhaustion like I had prepared myself for. She enjoyed seeing her brothers and sisters again ("I missed you, Jamie!" she proclaimed). Once Simon came home from his friend's house, Clare helped Shawn make pizzas and we had a pizza-movie family night.

So the first day went better than I expected. I will never be satisfied with the amount of information that Clare is able to impart to us, but I know she had a good day, her teachers were enthusiastic about her day, and Clare was disappointed when she woke up this morning to find out it was Saturday. I pray next week is just as wonderful!

Tuesday, August 30, 2011

Back to School

My favorite time of year - fall! (Oh, and back to school!)

I have enjoyed the laziness of (most) summer mornings and all that we have crammed into eight short weeks. But I always look forward to getting into our routine again. And I will say it - having a break from the frequent chaos, sibling bickering, and craziness. With the school schedule, we have a predictable pattern of frantic mornings, calmer mid-mornings, quiet early afternoons, and then back to a loud, boisterous household for the late afternoon/evening. I like the predictable. I like the routine. I like the calm before the storm!

Jamie started the third grade last week at his Catholic school. Clare has her first day of her transition kindergarten/first grade year on Friday, and Simon starts at his new preschool next Wednesday. So we are slowly being eased into our school routine. Which is good for me because with a new baby, I am still figuring out how to be showered and dressed by 9am, never mind getting five children dressed, feeding them breakfast, and packing lunch boxes and backpacks! (And before he starts huffing and puffing - yes, Shawn, does a lot of the morning grunt work as well.)

In most families, back to school means going out for new school clothes, buying school supplies, and getting haircuts. We did get some new uniforms for Jamie (but that's so easy that I passed along Jamie's sizes to a friend who was already going to the uniform store that I didn't actually have to shop!). We did buy some school supplies. No haircuts, though (we like them buzzed). In our family, back to school also means I try to fit in all the doctor's appointments for Clare that I can. So far, she's gone to the endocrinologist, cardiologist, and dentist. I have her new schedule for private speech therapy and hippotherapy lined up. She has upcoming appointments scheduled with nephrology and orthopedics. Nothing shocking or unexpected from these appointments so far, but I feel better having them behind us so we can focus on Clare's academic needs.

I am taking Clare to her orientation on Thursday for first grade. (They go over pick-ups, drop-offs, navigating the lunch room, and I start freaking out.) We went over to the school today to find out which first grade classroom she is assigned to, and we were able to see who her classmates were. Then she and Simon played on the school playground for a few minutes. Clare was thrilled to show Simon "her" playground, and she cannot wait for school to start. She asks me every morning if she has school today. She is excited about having her kindergarten teacher again. She is eager to bring "shells and cheddar" (her favorite all-time food) in her new thermos container for lunch. I know Clare cannot wait for Friday to come. I will be glad when Friday is successfully over! I cannot believe Clare will be in full-day school. Where has the time gone?

Thursday, August 25, 2011

The World of Simon

With the advent of Facebook, it is so easy for me to simply post the cute, funny sayings that go on in this house on Facebook when, in the past, I would collect them for the blog. There are so many blog readers who are not on Facebook, though. And I would hate for you to miss the little joys in my life!

Like my sweet, precocious, four-year old Simon. He has always been extremely verbal and super-smart (for example, he knew all his letters and numbers, both in recitation and recognition, before the age of two). I never know what's going to come out of his mouth, and there are so many daily occurrences where he cracks me up. So here are some quotes direct from the World of Simon:

Simon: We are going downstairs to play secret spy.
Me: Okay, see you later, alligator.
Simon: You don't need to call me alligator.
Me: Sorry - I thought that was your spy code name. [trying to be funny]
Simon: [in all seriousness] No, my code name is Sparkles.


Simon: Jamie told me when you kiss a girl, that's how you get a baby. I just kissed Eliza and I kissed you, so maybe I'll get a baby.
Me: That's not exactly how it happens. You won't get a baby from kissing Eliza.
Simon: Oh, you're right. Jamie said you have to kiss a girl you don't know. [Gotta love older brothers and their wisdom!]


Simon [checking every stall in the girls' bathroom]: "Awwww, man, where are the urinals?!?!"

Sunday, July 31, 2011

Cardiology Merry-Go-Round

Once again, we have a new pediatric cardiologist for Clare. This is our fourth cardiologist in six years. We loved #1 (who we met when Clare was barely 24 hours old), but she moved to Virginia. #2 was nice personally, but really disappointed us professionally. #3 was incredible personally and professionally, but having Clare's primary cardio in Boston did not end up working for our family and Clare's various medical needs. So we're on #4. We switched back to Children's Hospital at Dartmouth, but went with a new doctor practicing there.

We met Dr. G for the first time at Clare's six-month visit on Friday - EKG, echo, and examination. Dr. G is young, vibrant, thorough, and wonderful with Clare. A good fit for us so far. Her office is literally seven minutes from our house, we know from experience that we can pop in for a quick peek or blood pressure check if the occasion arises, and she practices in the same larger group as Clare's pediatrician, endocrinologist, and nephrologist, so they have access to each other's notes and Clare's medical records. That all works for us, so I pray that Dr. G works out! We've never really been that picky or unhappy with any of our providers, so it's been weird to feel as if we have not really had a cardiologist on board over the past two years.

Clare's visit went as well as expected. She remains clinically stable, which is the good news. Her gradients remain about the same, and her blood vessels are growing, but still not at a great rate (this is not unexpected with the severity of Clare's stenosis). The echo could not get a really good view of the pulmonary stents, so it's unknown how they're holding up. (Four years ago, one of Clare's stents was actually crushed in her artery and the echo did not pick that up. The doctors found out when they were in there during a cath.) Her ascending aorta and arch continues to look fabulous (this is the portion that was surgically repaired six years ago). Her descending aorta continues to also look stenosis-free. Her EKG was solid, and based on that, her coronary arteries seem to be good as well. Her blood pressures were fabulous, so she can continue off any hypertension meds. We have been monitoring her weekly for over a year now off meds, and the pressures are usually very good for Clare's condition. Her pulses were good, and all-in-all, a wonderful examination.

However... (and here it is, the not-so-good news)... Dr. G agrees with the previous cardiologist's assessment that Clare should undergo a cardiac catheterization in the near future. Prior to Clare's appointment, Dr. G had already spoken with Dr. B, the liaison cardiologist in Boston (Dr. B is a different cardio than the one we had been seeing as a primary in Boston, and he has been involved with Clare's case since her first catheterization at three months old - Dr. B is our cardiologist whenever Clare is inpatient at Children's - I know, it gets confusing!), and she reviewed the Boston echos on paper (Shawn is going to get her a digital copy of the actual echo video). Since it has been an amazing four years since Clare last underwent a cath, all agree that it is time to look at what's going on inside her vessels, other than just doing echos. Right now, the plan is to do another full work-up with Dr. G here in Manchester in six months, then schedule the cath a few weeks after that.

Dr. G cannot say right now what the plan will be during the cath, but we have been through this six times before and are quite familiar with the nature of this beast. I am 99.9% sure that Clare will have her pulmonary stents and smaller pulmonary vessels dilated. At the very least, the doctors will shoot a lot of dye and take a lot of pictures! They will be able to get better views on how her stents are holding up, what her coronary arteries look like, and maybe even exactly what her renal arteries look like (we've had those scanned recently, but a cath is always more accurate). So we'll hold tight for six months and take it from there.

Wednesday, July 27, 2011

Baby Blues

Eliza turned six weeks old yesterday. Unbelievable! I feel as if we are finally settled into some sort of pattern in our day. Eliza sleeps in her cradle, wakes 2-3 times at night to eat and goes right back to sleep, and is more alert during the day. She will sleep in the car seat and is a great passenger, but hates the bouncy seat and swing - so much so that I put the swing away completely and only put her in the bouncy seat for 20 minutes for my morning toilette. She usually naps in the playpen instead. In those first couple weeks, I never thought we would get there (I always feel this way at first - must be those hormones!). Part of me loves having the baby in bed with me, but the part that wakes up with a sore neck and back from falling asleep while nursing the baby is not so fond of it. But here we are, six weeks later, with a baby who predictably will spend the night in her cradle, and is "easy" enough overnight that Shawn at least gets a full night's sleep. (I am not bitter - this works in my favor for sleeping longer in the morning and letting him start the mad breakfast rush with the older children.)

Our bedtime is not as predictable, though. Right now, my sweet husband is doing his nightly duty of baby rocking since I have declared a nursing freeze for the next hour. Eliza will struggle to fall asleep for hours at night. Once she is down for the night, it's golden. But getting her there is frustrating. She fusses, needs constant position changes, wants to nurse, nurse, nurse until I want to scream, scream, scream. Shawn and I alternate between me nursing and him rocking. Some nights, we do this for a few hours. And, again, I know we will get there (since I have four older children currently asleep!), but the getting there part is so hard sometimes. This time with our tiny baby is so short and I don't want to wish it away. But it would be nice to get a little more sleep!

Sunday, July 17, 2011

Summer School

Clare is starting her third week of summer school, and she is loving the routine again. However, the first day was rough, to say the least. This summer, we chose to have Clare take the bus both to and from school. I knew that would be easier on me this summer rather than getting five kids out of the house every morning at 8am. Plus Clare loved riding the bus when she was in preschool. So I thought this was a great plan! It didn't work out as planned that first day.

Clare came off the bus crying. First, she arrived home 45 minutes after school ended, and we literally live two minutes from the school, so she was overheated from being on the un-air-conditioned bus for that long. Second, she thought her beloved kindergarten teacher was going to be her teacher for summer school (because we had told her that Mrs. D would be her teacher again next year, and Clare has a hard time with distinctions, so to her mind, this was next year), so it was a big let-down to have someone completely new. Third, her IEP states she is not allowed to be outside on the playground in heat and humidity, and as it was a 80+ degree day, her teacher kept her in the classroom while the rest of the class went outside. (Clare claims she sat and did nothing during this period, which I doubted.) And, fourth, not only was the bus hot, but Clare didn't understand why it was taking so long to get home, so she was worried that the bus driver was lost. Apparently, she kept repeating this and saying she just wanted to go home, and the bus driver "yelled" at her to stop crying.

Of course, all this sent me into a panic, and my first instinct was, That's it, Clare does not really need to go to summer school does she? My second instinct was, No, she DOES need summer school, she needs the routine, but I will just drive her to and from school each day. Shawn reminded me that Clare had a rough night's sleep and was up super-early in the morning (being excited about school), so she was exhausted to begin with, and he convinced me that Clare needed to try again and that we would get to the bottom of all this.

Clare and I had a pep talk the following morning that she would give the bus another try. She cheerily boarded the little bus, and I waited anxiously as the hours passed. Meanwhile, Shawn contacted the bus company and spoke to them to find out what happened on the ride home. It was a lot of sorting out the best route to get the multiple children home, and the bus did not even leave the school until 15 minutes past dismissal. I spoke with the driver personally when she dropped Clare off (it's a different driver coming and going). She did have a loud voice, but seemed very sweet and friendly with Clare. She also had horrible directions from the school to our house, so I gave her the most direct route (and now it takes ten minutes from school dismissal to when Clare arrives at our driveway). After school, Shawn spoke with Clare's summer school teacher about the playground. He gave permission for Clare to play on the playground as long as she's only out there for a brief period of time (and it's not over 90 degrees). The teacher explained that Clare stayed inside to blow bubbles and was able to choose a friend to stay inside with her. We knew Clare's view of the day would be slightly skewed (she still has trouble with storytelling), but it did make me feel better that, although Clare perceived the situation to be terrible, neither the bus driver nor her teacher did anything I could fault them for.

When these situations occur, my mother bear kicks in (more so with Clare than the other kids), and I have to remember not to make rash decisions based on my initial gut reaction. Such as foregoing summer school all together based on the first day. Day two and on have gone great, and Clare is enjoying school.

Monday, July 11, 2011

Transition

The transition of "bringing baby home" is always a little rough. Our transition with Eliza has been MUCH smoother than with Violet, due to the easier delivery (not necessarily easier labor, but the VBAC recovery was SOOOO much better than the C-section recovery!). But the transition is an adjustment period whether it's baby #2 or #10. I forget how "spoiled" I was by having only children who could walk, talk, feed, and entertain themselves (for the most part). A newborn forces me to let the laundry slide, leave the living room messy at the end of the day, and plan simple meals (or forego the planning and just wing it with whatever is in the pantry).

The Type A part of my personality has a very hard time adjusting to this "slide" with each new baby. The crumbs under the dining room table are mocking me. The to-do list I made on June 11 (as in the day before my water broke) still sits on the counter just begging to be tackled. And I want to do stuff with my kids this summer - much of which cannot be done with a baby.

But then I remember that this phase of our life - Eliza's newborn-ness - is so very short. I do not know if I will ever have another newborn (I think I've said that four times - HA!), and I want to cherish every moment. And that means cherish the moments even if our days are spent hanging in the backyard with the kiddie pools and freeze pops instead of going to the beach or hang gliding or whatever other silly thing I imagine we could be doing in those moments of resentment at our "boring" summer. Cherish what it is and let go of what it is not.

(And, of course, it took me two weeks to actually finish this post, and Eliza is almost one month old. My time on the computer, scrapbooking, grocery shopping is very limited right now! On the other hand, I do a lot of sitting on the couch while nursing Eliza, so I have finished some really great books!)

Saturday, June 25, 2011

Photos Finally!

(As usual, I am bad at formatting these!)























Tuesday, June 14, 2011

It's A Girl!

Eliza Marie was born at 1:01am this morning. She weighed 7 lbs, 13 oz and measured 20" long (my second biggest baby!).

Trying for the VBAC was a rough road, but I am so blessed to have an amazingly patient and loving husband and a terrific OB staff, both nurses and doctors. My water broke at 9:30pm Sunday night, and I really thought labor would take off and we would have a baby about 10-12 hours later. Ha! Shows that, even after four previous (all very different) deliveries, I still haven't learned that every baby comes into the world at their pace. And Eliza was no different! By 10pm Monday night (over 24 hours since my water broke), I was in a lot of pain from intense contractions, but still only at 4 cm dilated (imagine my extreme disappointment - understatement of the year). Over those L-O-N-G 24 hours, I was so ready too many times to throw in the towel and just get it done with a C-section. But Shawn was there through every painful contraction encouraging me that I could do it and that the pain on this end was worth the recovery on the other side.

I had three different OBs from my practice throughout the labor process and each one was awesome. They were all committed 100% to this VBAC, and not one of them rushed me or brought up having a C-section. You could see the wheels spinning with my final OB (who delivered Eliza) who was actively working on solving the "problem" of getting my labor to take off. Around 12:45am, labor was even more intense, so my OB wanted to just take a peek. I geared myself up mentally that I would only be another couple centimeters dilated. I was in shock when she announced it was time to have a baby. I was prepped, I peeked at the clock (12:59am), and Eliza Marie was born two minutes later at 1:01am. Twenty-four hours to get from 1 to 4 cm and then less than 3 hours to go from 4 to 10 cm! There is no predicting what will happen in labor!

Eliza is beautiful, nursing great, has a full head of dark hair like her siblings did at birth, and looks a little like a mix of Simon and Violet (and her cousin Finlay!). She squawks a little bit, nurses, and goes back to sleep. I am exhausted (five hours of sleep total over the last 50 hours), but I also feel great. I am so thankful we remained committed to the VBAC because this recovery is definitely worth those last 27.5 hours!

(Pictures to follow as soon as I get them uploaded on the computer!)

Monday, June 13, 2011

Today's the Day

Today is Birth Day! I cannot believe it is finally here. My water broke last night at home at 9:30pm. Since I am positive for Group B strep (bacteria that I could pass along to the baby), I had to come right into the hospital and start on IV antibiotics. The good news is that I was able to get two doses in already (they prefer to have at least two on board prior to delivering). The bad news is that I am not in any good contraction pattern, so after nine hours in the hospital and one hour of sleep, I still have not really made any progress. The doctor is going to start Pitocin in a couple hours (once the shift change is complete), then we should be off to the races. Prayers for a successful and safe birth (no C-section please)!

Friday, June 03, 2011

Clare's IEP and The Plan

This morning we had Clare's IEP meeting for next year. As eager as I was to add some new goals to her IEP (especially goals related to a sensory diet, social skills, and self-advocacy skills - see how much we have learned over the past year??), I was more eager to finalize The Plan for next year.

Everything went smoothly. There were a few minor details we ironed out, but we are very happy with the IEP for next year and approve The Plan. As it stands, Clare will repeat half-day morning kindergarten with the same teacher and curriculum. Everyone agrees this will be such a benefit to Clare. She entered kindergarten last fall with almost zero knowledge of letters and numbers so she really struggled and made little progress in the first half of the year. Clare blossomed in the second half of the year, though. Now she will re-enter knowing a good majority of her letters (still struggling with numbers), so we hope she will continue to make great progress. Clare has done great achieving her OT, PT, and speech goals, so the new goals for next year are in line with where she needs to be. Once the kindergarten day is done, Clare will join the first grade class for their lunch and recess, then in the afternoon, be in a first grade class for math (with a modified curriculum) and specials (gym, music, art, science - areas where she does not need a modified curriculum). When she needs pull-outs for resource room and therapies, the team is going to try to work her schedule (and theirs) so she has less pull-outs during the kindergarten day and will receive her extras during transition times or a specials time. This year, out of an 11-hour kindergarten week, she was pulled out 3 hours for services. That's a huge chunk of time away from the curriculum!

Walking away from the meeting, I kept thinking how blessed we were with our little elementary school. It's been a learning process over this past year for Shawn and I, and we have spent hours doing what we could on our end to help Clare in getting all we can for her when it comes to school, but her team has been excellent. The special education teacher made a comment in the meeting about how she thinks they "really know Clare now" and "know her needs." And I have to agree 100%. Many of the items on our priority list were addressed by the team and included in the IEP before Shawn and I brought them up. The school guidance counselor is a new member of the team this year, and she had already come up with ways to address social skills and self-advocacy skills. The speech therapist wants to switch Clare from group speech to individual speech, feeling Clare will benefit more from the one-on-one time (we have been advocating for this change for three years now when developing IEPs with the preschool). Despite budget cuts and other uncertainties regarding the upcoming school year, the team was insistent that Clare will have a paraprofessional, no services have been cut from her IEP (in fact, she has increased services), and that they are doing everything they can on their end to help Clare succeed.

One piece of "sad" news that her teacher shared with us recently is that the other girls in the class have matured past Clare in the way they play and interact. We knew this would happen (we have seen it already happening with family friends and their children's interactions with Clare), but it's still a tough pill to swallow. Clare has been invited to a classmate's birthday party next week, and I am having such bad mommy-indecision about it. Although I think everyone in the class genuinely likes Clare, I don't think any of them are particularly her friends. When I observe her on the playground or running around with the kids after school, no one really interacts with her. I am so grateful for the fact that she is still pretty much oblivious to these nuances and just has a great time doing what she wants to do. But when we went to a birthday party back in September, Clare was definitely left out of the action (and I actually started to cry at the party and I was not even pregnant!!). Now these little girls have been together for the entire school year and have formed their bonds and cliques that Clare is not a part of. I just don't know how much my 9-month pregnant-hormonal-emotional self can stand to watch. Then I always get the anxiety of what is Clare going to eat (it's a "luncheon" party right after school), how will she act in a stranger's house, what will she get into, will there be any outbursts to deal with? Clare knows about the party, so if Shawn can swing his schedule around to watch the little ones, I know I will end up taking her. This is one of those tough moments where I have to swallow my own anxiety and reluctance and just be there for Clare in whatever capacity she needs me.

Sunday, May 29, 2011

Toddler Quirks

Violet is an enigma. Although she babbles all the time, she is only now starting to put complete sentences together at 28 months old, and those are fairly limited in terms of vocabulary. So when she plays by herself and babbles, I have no clue what's going on in that little head of hers.

Two mornings a week, when Simon is at preschool, Violet has the house to herself. I usually employ this window of time to get some chores done since Violet (generally) loves having the run of the house and the toys. I love to hear her "talking" to herself while I clean or fold laundry. This morning of the photos (before the week of rain hit us), she was going back and forth between the four open windows in the living room and dining room. I am not sure what exactly she was doing, but after about 20 minutes, she moved on to another activity. Then I saw all the open windows and the creatures she had left there. I think they were guarding the house for me. I left them there all day because they were so cute and it reminds me of the little unknown joys that children bring.

Violet also has a fondness for having a container of "stuff." Usually little baby dolls from the dollhouse, Littlest Pet Shop animals (her favorite being the tiny birds, which she calls "tweet tweet"), and other sundry odds and ends. Usually, she steals Clare's ballet purse or some other purse to carry her loot in. But on this day, I found her walking around with her prized possessions in a cage. Slightly odd, but very endearing. Sometimes I share the sentiment that life would be easier if I could just put all my little darlings in a cage!

Friday, May 27, 2011

Boys V. Girls

Since we do not know the sex of this baby, we have had many queries about if we "think" we know what we're having. And, of course, the answer is NO! How could we possibly predict that?? But the debate rages on.

Last week, one of the neighborhood boys was playing on our swing set. He is 5 years old with an older brother. He asked me what the baby's name was, and I told him I did not know because we didn't know if we were having a boy or girl. His response was: "Oh, you're having a boy. You have a lot of girls already!" I thought it was cute that to him (only having a brother), two girls was "a lot of girls." I didn't point out that we also had two boys since apparently this was not a lot of boys to him! Then this morning, Simon told me the baby was a boy because "we already have a girl baby... Violet! We don't want two girl babies!" So maybe the baby is a boy??

Weirdly enough, I do not have pregnancy dreams. I have not dreamt of labor, delivery, or whether the baby is a boy or girl. These days (or nights rather), I don't think I am asleep for long enough stretches to even have dreams! And just when I thought we were settled on names, it turns out we are not. Our boy's name is decided (right, Shawn?) but we're still throwing out girl potentials. Nothing has grabbed us and screamed THIS IS IT! I felt like with each of the older four children, as soon as I heard what is now their name, I knew that was the perfect name. I just don't have that feeling this time when it comes to a girl's name. So my prediction is that this baby is a girl and will not have a name until we see her!

Today marks 37 weeks, and we are all so eager for this pregnancy to end and meet Baby #5!! This is the latest in the "summer" I have been pregnant and have the cankles to prove it.

Thursday, May 19, 2011

Embraceable

Embraceable

A film about Williams syndrome.... the trailer alone made me cry.

You have to check it out.

Saturday, May 14, 2011

The Personality

"Cocktail Personality" - One of the first phrases we heard six years ago to describe individuals with Williams syndrome.

Even the Wikipedia definition of Williams syndrome contains this statement: "Most individuals with Williams syndrome are highly verbal and overly sociable, having what has been described as a "cocktail party" type personality, and exhibit a remarkable blend of cognitive strengths and weaknesses."

In the past few months, Clare's "cocktail personality" has really been coming out full force. She talks to EVERYONE everywhere. She loves to say "hi" to every person she encounters. But she just does not say hi. She likes to add something personal, such as "Hi, guy!" or "Hi, lady!" Recently, at Jamie's soccer practice, she passed one of Jamie's teammates - a boy who has pretty long hair for an 8-year old boy. Clare brightly chirped, "Hi, girl!" as she waved and walked by. That prompted our discussion about how saying hello is okay, but we can leave it at that. If we do not know the person or do not know their name, we can just say "hi." Nothing else needed to be added. It's weird the conversations you have with your children and the rules you have in place that you never dreamed you would need.

I love that Clare is friendly and outgoing. That she smiles at everyone and wants to brighten people's days. That she enjoys striking up conversations with just about anyone. But I admit there are many times I cringe knowing what's ahead, the scenarios I can see coming - such as standing in line behind the woman with purple spikes at the OB's office ("I like your purple hair!") or passing the overly-made up woman at the grocery store ("I love to wear make-up like that!") or her new favorite is telling the entire world that her mom is going to have a baby. (At least she doesn't try to pull up my shirt to SHOW everyone like Violet does!) These days, we are receiving ample opportunity to talk about boundaries, personal space, and appropriate conversation.

Thursday, May 12, 2011

More Photos!

Clare's 6-year photos and Simon's 4-year photos. Once again, I love that the photos completely capture their individual personalities!


Clare was quite the ham for her "photo shoot," and I ended up with about 20 amazing pictures. Very hard to narrow it down! Simon was being goofy and didn't want to take any direction, but the photographer was amazingly patient and able to capture some great shots. I am very pleased with my new wall hangings!

Friday, May 06, 2011

Photos Photos

I brought Jamie and Violet to have their professional photos taken a couple months ago around their birthdays, and today I am taking Clare and Simon, so I wanted to share them. (I will share Clare's and Simon's once I have them.)

The last time I took the three older children to have photos done was two years ago. (I did do Violet's at one year old.) With the age of digital photography, we have thousands of photos - and thousands of REALLY good photos. So I let myself skip a year last year. But I still love the professional shots to decorate our walls. I love photos of my children and family and would rather see those around my house than any other decoration. I regret not taking Jamie, Clare, and Simon last year, although it gave me a chance to enjoy their beautiful 6-, 4-, and 2-year old photos for two years!






I debated attempting the group shot today, but being 34 weeks pregnant and having no clue what to put them in to coordinate, I am wimping out on that. Plus if I wait 6-7 months, I can get one with all five children (and maybe even a family portrait, since Simon was 11 months old the last time we did that!). But these are Violet's stunning 2-year photos and Jamie's awesome 8-year photos. I love that they totally capture each child's unique personality.

Wednesday, May 04, 2011

Choices

We recently made a decision in our life. Nothing earth-shattering or even something that in a few years we will really think about. But, in the moment, this decision was eating me up for some reason. To me, it's all about leaving the comfort and security of a place I know well, people I truly like, and a situation I am used to, familiar with. To begin again in a new place with new people, but one that will be easier for us logistically and financially and hopefully make our life slightly simpler.

There are always choices to be made as a parent. And I struggle constantly with whether or not I am making the right choices. Some of these choices are so tiny in the grand scheme of life. I remember how much I agonized eighteen months ago about putting Clare on the bus to school. I went back and forth in my mind, with Shawn, in my mind again. We ended up letting Clare ride the bus to school because it truly was what worked out best for our family at that time, and it turned out to be a non-issue. In fact, Clare loved every minute of it. Then there are the huge decisions to be made when it comes to our children's health, particularly Clare's. In some ways, though, those decisions are easier to make because you weigh your child's life against the risk of a procedure or other medical decision. And your child's life wins every time.

When I attended my Moms' Day Away, we talked both in our large group and small group about cutting out the extras from our life. Those little things we do or traps we fall into that really make our life more complicated than it has to be. Does my child have to play two sports plus learn to play an instrument? Do I have to empty all the hampers every day or will the earth continue on its rotation if I let the laundry pile up a bit? Do I have to be president of the PTO or even attend every meeting or is it okay to simply be one of the parents who bakes for the teacher's luncheon once a year? As our family grows in size and busy-ness, I am slowly coming to peace with the fact that I cannot do all I want to do. I cannot be everything I want to be. And I think I am okay with that. Because it makes me less stressed and a happier wife and mother. Which makes my husband and kids happier. Which makes life so much sweeter!

Sunday, May 01, 2011

Happy 4th Birthday, Simon!

Happy Birthday to our spunky, goofy, cuddly, new four-year old Simon Joseph! It has been an awesome year watching you grow in leaps and bounds. You have become a great playmate to all your siblings. You love playing with Violet in the mornings, and I often find myself with two crazy kids concocting all kinds of interesting schemes! You enjoy the afternoons with Clare, playing computer or board games. Once Jamie comes home from school, the two of you will hole up in your bedroom with Legos or Bionicles. But your favorite activity is snuggling with me on the couch reading I-Spy books. You cannot get enough of them and can find the hidden items quicker than Mom can. I love that I have a buddy to eat carrots and hummus with, since none of the other kids will touch them! Your love of learning, activity books, mazes, and games is insatiable, and I hope you always have that love of using your mind like that. You are such a joy to us, Simon, and we love you so much! Happy Birthday!

Thursday, April 14, 2011

The Kiddos, Part 2

Simon has one month left of his first year of preschool. On the whole, it has been a good year, and he has enjoyed going to school. After much deliberation, we made the difficult choice to not reutrn to the same preschool next year. The beloved 4-year old teacher is leaving after so many years at the school, and she was really the incentive behind my willingness to stick it out for another year (it's a bit of a drive). We toured a Christian preschool closer to home that some of our friends' children attend and have decided to make the switch. Simon seems to accept this decision without any complaint. Although he likes preschool, he has not made any "best" friends there and does not seem particularly attached to the school. I am sad to say goodbye forever to the school becasue Jamie did have such a great experience at this school, yet at the same time, I am not sad to say goodbye to the drive and the craziness it adds to our schedule. I am all about simplicity (especially with a new baby on the way!).

Violet has had a rough six weeks with illness. We were all sick with a cold at the end of February. However, Simon, Violet, and I could not shake the cough and congestion. Both Simon and Violet ended up with ear infections, and I came down with bronchitis. By the time I brought Violet in, her ears were so infected (as in pus bubbles ready to pop! ewwww... gross!), that the goop was coming out of her eyes because there was nowhere else to go. So the doctor started Violet on a course of augmentum before things got worse. Unfortunately, we now know that Violet shares her dad's and older brother's amoxicillin allergy. She ended up in hives from head to toe. As soon as I saw them, I knew instantly what they were from (having dealt with the same thing with Jamie when he was two). Since Violet was on day eight of the antibiotic when she broke out in hives, the doctor felt it was okay to not prescribe a different antibiotic, but absolutely stop the augmentum. Two days later, Violet's hives became worse, her breathing was slightly labored, and her face was starting to swell, so it was off to ER. She still had a double ear infection, so after some monitoring and oral steroids in the ER, we were sent home with prescriptions for more steroids, bendaryl, pepcid (apparently an antihistamine as well) and zithromax (another antibiotic). A week later, we followed up with the pediatrician again. Violet STILL had a double ear infection. And she still had the horrible rash from the allergic reaction. I think she was more miserable from the rash than the ear infection. She needed benadryl at night to go to sleep because she was scratching herself until she bled. Not to mention that antibiotics cause diarrhea, so now I was pumping her full of probiotics as well, and we had to add a medicated diaper cream to the mix. So now Violet was put on omnicef, a third antibiotic. Unfortunately for Violet once again, there is some cross-sensitivity and 10% of people allergic to amoxicillin/penicillin are also allergic to the class of drugs that omnicef is in. Violet's reaction was not as severe to the omnicef, but her rash worsened. She completed her course of medication, suffered through the rash, slept on lots of benadryl, and I think we're in the clear now! Everyone has been healthy for a couple weeks now. (Oh, I better not have just ruined anything!)

We are all looking forward to spring, Easter, Simon's birthday, and Jamie's First Communion!

Wednesday, April 13, 2011

The Kiddos, Part 1

There are times when I feel guilty about just updating about Clare. Yes, the title of the blog is Clare's Journey and the ups and downs associated with Williams syndrome is a big part of our life, but the blog is really more about our family and whatever else is on my mind, so I always feel the mom-pressure of dividing the blog attention evenly. So here goes!

Winter indoor soccer is a wrap, and now we have moved on to spring travel soccer. I love that Jamie has found a sport he truly loves and is skilled at, yet it is always an adjustment to everyone's schedule to have soccer three times a week. His first practice was last night, and, since Shawn is away this week, it was a late night getting everyone into bed, so we all paid for it today! (Extra grumpies all around.) In school, Jamie is busy doing the school play again this year. I am not sure how thrilled Jamie is that they are performing Cinderella this year (he is one of the mice), but he enjoys doing the play, and I hope he continues loving the theater like his parents do. Shawn and I talk hopefully that, in the future, we can be involved in a community theatre together. It definitely brings back memories of our college days!

Spring allergies are having an impact on Jamie and his migraines. Even though he still receives monthly allergy shots, when the allergens start to emerge full-force, Jamie still reacts to it. Last weekend, we knew allergy season had officially started because Jamie fell asleep before dinner on Saturday evening, and, on Sunday, I went into his bedroom in the mid-afternoon to find him sound asleep on his floor! So I knew his allergies were knocking him out. We added a daily dose of Zyrtec to his schedule to get him through the next couple of weeks. I hate seeing him suffer like this. I never feel like it's "fair" that an eight-year old struggles to just get out of bed some mornings. In my mind, he should bounce out of bed full of energy every day. Save the struggle for when he's old like his mom!

Clare is done with all her educational testing between the Boston WS Clinic, visit with Dr. Mervis, and her three-year evaluation in the school district. We have a meeting with her school next week to discuss the results, amend her IEP a bit, and maybe chat about next year. Clare will have her official IEP meeting in June where we will formalize the plans for next year. She continues to love kindergarten and is making progress. Recognizing letters, counting, the concept of rhyme, letter sounds, and forming letters and shape is still slow, but I don't want to inundate her with constantly making her "work" on her letters. There was a period a couple months ago when Clare did not want to go to school. She would cry when we worked on the alphabet and even referred to herself as "stupid." The psychologist in Boston picked up on her frustration in this area as well, so we have backed off at home. Dr. Mervis recommended the Handwriting Without Tears program, which we have not started yet, but I also wanted to explore options for Clare that were fun. Not just sitting at the table and drilling it into her. Which led us to hippotherapy, another suggestion from Dr. Mervis and one we have considered on and off over the past few years.

Clare started hippotherapy three weeks ago and is using it as a form of occupational therapy. Stating that Clare loves riding the horse is a huge understatement. She tells me often that she misses Nori (the horse she rides), and I have to wait until lunchtime the day of hippotherapy to let her know that we are going or it's nonstop asking when are we leaving. While riding, Clare works on skills such as dressing, hand-eye coordination, drawing and writing, some vision therapy, and general core stability and trunk strengthening. It is a workout for Clare. I don't think she could ride for longer than the 30-minute session, but she loves every second of it and is always sad to say goodbye to Nori. The OT has recommended we also take Clare to see an opthamologist who runs a vision therapy specialty practice (coincidentally the same opthamologist that Clare's early intervention OT recommended when she was about a year old). Clare does have some tracking and visual scanning issues, which the OT has really been able to see when Clare is riding (her eyes lose focus when the horse turns a corner - almost like the eye muscles cannot keep up). The OT warned that this can lead to some problems with scanning when Clare learns how to read. I feel that just as we are starting to get something under control, something else pops up! But, then again, this is also a problem we have heard about throughout the years, so perhaps we should have done something earlier about it.

Sometimes I get caught up in the frustration of the educational process and forget to take note of what Clare is doing in her everyday life. When I think about it, she really has accomplished so much over the past few months. She rides her tricycle nonstop now without any help. She is like a little speed demon on it. She does not seem to mind that other kids her age are riding bikes. She enjoys the freedom and independence of being able to get on and off the trike by herself and go. Another small victory (but also huge) is that she is independent 95% of the time in the bathroom now. This is such a success because, again, it is another assertion of her independence and self-help skills. She no longer regularly announces that she has to go - she just goes. Shawn installed a bar on the wall for her so she can get on and off the toilet by herself. The only thing I help her with is buttoning her button if she is wearing jeans! She can undress herself now. She still needs help getting dressed (it's hard to maintain balance while pulling pants on - I have trouble with it!), but can pull her socks on now and often can put her shoes on, too. When I get discouraged, I remember where Clare was six months ago and can definitely see the progress!

Hello, Spring!

I think spring is here. I know the rain is here. And travel soccer, growing tulips, window washing, ballet recitals, play practices, and I am in my third trimester!

I hit the 30-week mark last week in my pregnancy. Shawn and I decided not to find out the sex of the baby for the first time. We figured Baby #5 was a good time to do something different! With two boys and two girls already, we refer to this baby as our "tiebreaker." We have finally settled on our names (I think?). I really should not complain about my pregnancy because I am a low-risk preggo mama to begin with, but I have definitely entered the stage of infinite heartburn, back pain, swollen ankles (thank goodness flip-flop weather is around the corner), and insomnia. I am pretty sure the remaining 10-12 weeks will fly by, though, since the long drag of winter is over.

Two weeks ago, I attended a Moms' Day Away hosted by Faith and Family, a magazine and blog dedicated to Catholic living. I have been a fan and subscriber of the magazine for years and reader of some of the blogger moms for just as long. It was such a treat to not only get ten continuous hours away from the nitty-gritty of being the mom but to spend the time with two friends, meet some of the women who have inspired and strengthened my vocation as a mother over the years, and enjoy a day of prayer, reflection, laughter, and food I did not prepare or cook. That one day focused on my motherhood reinforced for me that this is where I belong. Even on these nights when I am exhausted from three days of solo parenting, battled three of my four children to get into bed (who are more exhausted than I am, and I realize this is the source of their turning into little hellions), and feel like my chest is on fire from heartburn and my back hurts so bad I wish a pregnant woman could take ibuprofen or vicodin, I am still exactly where God wants me to be. I hold onto those thoughts, feelings, and reflections and thank God that I am so blessed to know where I am supposed to be in life. That I am not "lost" or "searching." I still have lots of work to do on my vocation as a Catholic wife and mother, but I know I am going in the right direction.

So I wanted to update on all the children, but it's time to end.... the heartburn sends me over the edge most nights. I never get heartburn in every day life, just in my third-trimester pregnancy life. Nothing soothes it really. The only "cure" is to go to bed and, when I awake, enjoy my six heartburn-free hours before it rears its fiery head again after lunch. Although a bowl of cereal does take some of the sting away. Which is where I am headed.

Thursday, March 31, 2011

Happy 6th Birthday, Clare!

Six years ago today, we were waiting and waiting for our first baby girl to arrive. You were already nine days overdue. The Easter outfit I purchased for you sat waiting in the nursery (and was now deemed your Baptism outfit instead) since you did not arrive by Easter (which was five days past your due date). I was big, tired, cranky, and all done wiith being pregnant. We scheduled an induction with my OB for this date, but I just knew you would arrive before then. Well... you did not.

As we checked into labor and delivery at 7:30am, the nurse informed us that we should have received a phone call postponing the induction since the L&D floor was full. I almost lost it then. There was no way I was going back home. My baby was coming out TODAY! Once the nurse realized I was nine days overdue, they set me up in a teensy curtained area in pre-op. There was barely any room for Shawn to sit never mind the four anxious grandparents milling around. I refused to let my OB break my water in that little space, but the Pitocin was started, and the induction officially began. What a crazy day! (As if any labor and delivery is not crazy!) Things went slowly, I finally was transferred to a real room with a real door that closes and a real bed. I kept making progress, but slowly. I was at 7cm for what seemed like days and days and days. But I kept telling everyone that she was coming. I knew she was coming. At 8:30pm, my dad had to leave to catch a plane for a business trip, and both the nurse and OB told him this baby was not coming before midnight. So he left. But I knew she was coming. They kept checking me and telling me I was only at 7cm and not to push. I was on no pain medication, and I just knew she was coming. Those were the words I kept saying over and over. "She's coming, she's coming, she's coming!" The last time, those words were screamed at the top of my lungs. My OB was down the hall, and (she tells me after the fact), she said, "That's my patient!" and ran in. Sure enough, you were coming. When you were ready to come, you didn't care that I was not fully dilated, that no one else was prepared for you to be delivered (except your mother!). 8:52pm and Clare Therese was born!

I fell in love that day with my first baby girl. The nurses could not get your temperature up even under warmer lights, so I begged to hold you skin-to-skin and nurse you. We cuddled under the blankets, you latched on as if you had been nursing forever, and your temperature shot right up. The world was a perfect place, and we were on Cloud Nine. For about 16 hours.

When I think back, I wish I could hold on to those 16 hours of ignorant bliss forever. When our two-year old son came to the hospital the following morning to meet his baby sister. When I thought over and over what a perfect little family of four we had become. When I could not believe I had been so blessed with a gorgeous son and daughter. When all was right in my little world, and I felt so much at peace.

Then we heard the words "she has a heart murmur." And bigger, scarier words were thrown around - pediatric cardiologist, echocardiogram, pulmonary valve stenosis, congestive heart failure, sudden death. Over the next few days, then weeks, our entire world was turned upside down by what is now an everyday part of our life - Williams syndrome and congenital heart defects.

But there is a happy ending. Because we have you, Clare Bear. We have had your beautiful, loving, joyful person in our lives for six years now. I would walk this road all over again. How could I wish it otherwise when it would mean I would not have you? I love you so much, my sweet girl. Happy Birthday!

Wednesday, March 16, 2011

Hockey Girl

I love that I can walk into any room in my house at any given time, and I never know what I might find. Today I found Violet geared up playing hockey! (She did this all by herself with Jamie's pretend hockey stuff.) Priceless! This is definitely one of the joys of motherhood.

Wednesday, March 02, 2011

Fighting Everything

Clare is 100% recovered from her surgery and anesthesia. Well, may 95% recovered because she still has the rash from the allergic reaction, but it does not seem to be bothering her anymore, so it's hopefully on its way out. I am taking her to our NH dentist on Friday for a quick follow-up. Still waiting to hear back from the allergist about their thoughts. They were going to "round table" Clare this week, but we know how the waiting game is played.

Meanwhile, spring has been teasing us with little thaws and warm-ish days, but then we got hit with two smaller snowstorms over the weekend. I believe I can speak for almost everyone in New Hampshire that we are ready for winter to be over. This winter has been a nightmare for illnesses. I don't think one day has gone by this entire January, February, and now March when at least one person in our house has not been sick. We have battled colds, coughs, stomach bugs, infections, all kinds of yuckies. Right now, Simon and Violet both have ear infections and are on antibiotics, and I am heading down that path. They started as regular colds that are settling in for the long haul. Simon is halfway into his course, so he is feeling a lot better (and we feared he was developing pneumonia again, so we were relieved to hear it was "just" an ear infection). Violet was diagnosed with a double ear infection and conjunctivitis just last night, so she is still pretty miserable. My OB instructed me to see my PCP, so I have an appointment today. I am praying that the doctor will see the wisdom in putting me on some antibiotics as well. I very rarely take any prescription medication at all and have been running an off-and-on fever, so I am hoping that for the sake of the baby (and the miserable mom), they will prescribe something.

We are surviving with lots of rest, television, and cough drops. Blah....

Friday, February 25, 2011

Quick Update

Clare is home from the hospital. The surgery went well, and the dentists were able to save her tooth. She had a bunch of work done and is doing well mouth-wise. However, she is having a reaction to the anesthesia (which happened after her last surgery in July 2009 as well). Nothing major, just uncomfortable. I was fortunate to get an appointment with the allergist yesterday evening, so now we are going to work on finding out what exactly sets Clare off. Since she is due for a cath within the next year, the cardiologists want us to get to the bottom of this before she goes under anesthesia again.

One more procedure behind us. Thank you for all the prayers!

Tuesday, February 22, 2011

Flying In, Driving Out

I am waiting for Shawn and Clare to return home from their trip to Louisville, Kentucky to see Dr. Mervis. Being that they have a layover in Philadelphia, their flight (of course) is delayed, so I am still waiting for their arrival at home! (No insult to my peeps in Philly, but the airport stinks.)

Dr. Mervis was kind enough to let me conference call in on her chat with Shawn this morning, so I got to hear firsthand the scoop on Clare. Overall, she is doing well and actually scored in the average range as compared to typical children in her verbal and nonverbal reasoning skills (which means she scored quite well as compared to other children with Williams syndrome). When it comes to her spatial skills, however, not so good. Which we expected, knowing Clare as we do. She also is having more trouble than is typical for kids with WS with some language skills. The fact that she is having trouble comes as no surprise since we, her private speech therapist, and her team at school have all noticed that there are some challenges when it comes to language development with Clare. However, it was a surprise to us that this is NOT typical in WS and that Clare is behind in these skills when compared to other children with WS. Definitely something to work on, keep an eye on, and be sure the school knows that it cannot be blown off "just because she has WS." (Not that the school is overlooking it right now, just something to keep in mind when discussing Clare's progress at our next team meeting.) The actual term for Clare's problem is "specific language impairment." Unfortunately, she is about a year too young to administer the actual test for this impairment, but it is certainly something we can work on over the next year and have Clare tested when she visits Dr. Mervis again next February. In the meantime, Dr. Mervis provided some recommendations for what Clare should be working on at home and in school and emphasized that Clare should definitely repeat kindergarten. All in all, I think the visit with Dr. Mervis was successful, but I know I am going to have two very tired people arriving home (hopefully any minute).

We leave at 5:30am tomorrow morning to bring Clare to Children's Hospital Boston for her dental surgery. If all goes as planned, Clare is going to have a tooth extraction, some fillings, x-rays, and a cleaning (what else can they squeeze in dental-wise while she's under anesthesia??). So she will be good to go for another six months. Then Clare and Shawn will stay overnight on the cardiac floor so they can keep an eye out as she recovers from anesthesia. Her surgery is scheduled for 8:30am, so prayers are appreciated!

Saturday, February 12, 2011

Surgery Scheduled

Clare's dental surgery is scheduled for February 23, which is perfect. It gives me more than a week to get all my ducks in a row plus it's over school vacation week, so Clare will not miss any school. Clare is only in a half-day morning program so between the Williams syndrome clinic, snow days, and snow delays (kindergarten is cancelled completely when there is a delay), she has already missed so much school over the past few weeks. Yet the surgery is not so far out that my days of freaking out over whether the "bubble" in her tooth has popped and is releasing dangerous bacteria into her bloodstream and potentially her heart is down to only a *short* 11 days.

I will take Clare down to Boston on February 16 to do her pre-op day. This will give us the opportunity to meet with the team involved in the surgery and go over everything. I have been impressed so far with how on top of everything they are (as they should be, but you never know!). The surgical coordinator and I talked yesterday on the phone (about an hour after she called me with the surgery date), and she had already spoken with Clare's cardiologist, pediatrician, and nephrologist to get the approval from them to proceed with surgery. She only needed me to sign a release with the endocrinologist before they would release any information. (Which took me about three minutes thanks to fax machines!) Everyone has given the thumbs up and is on board, so we are ready to go. I will get to talk with cardiac anesthesia on the 16th, but we have dealt with them (too) many times over the past six years, so I know they are usually well-familiar with WS and the associated anesthesia risks.

Clare will have to stay overnight on the cardiac floor following the procedure just to be on the safe side. She has had issues with anesthesia in the past (abnormal rhythms, cardioversions, blood pressure swings), but she was undergoing a catheterization each time, so the doctors were actually in her blood vessels and heart. When she had her fistula surgery eighteen months ago, she did great during the six-hour surgery with anesthesia. She had a lot of trouble post-surgery from the effects of so much anesthesia, though - high fever, vomiting, general yuckiness. The dentist assured me that this was a straightforward procedure, however, and Clare should not be under anesthesia that long. Hopefully an hour tops. So her recovery from the anesthesia should not be as bad. But I am glad they are keeping her overnight so the cardiac nurses and cardiologists can keep an eye on Clare post-surgery. If all goes as planned, she will be discharged the next morning.

I have our childcare lined up, and we are ready to go! Thankfully Clare is only in pain when we go near the tooth, so we are avoiding brushing that part of her mouth until after the surgery. Shawn and Clare are heading down to Kentucky on the Monday and Tuesday prior to her surgery to meet with Dr. Mervis, one of the WS experts in this country. So it's going to be a busy couple of weeks for Clare. Unfortunately, school break is not going to be so relaxing for her!