Friday, December 31, 2010

Judgement-Free Zone

Shawn and I decided to cancel our gym membership for 2011 and purchase an elliptical for the home instead. Over the year, for the amount we were paying for our membership plus childcare (while I worked out), the cost of the elliptical was considerably less. There were a slew of other reasons why the convenience of having an in-home machine was better for our family. Plus we figured that if the big ole machine was sitting smack-dab in our bedroom, we would feel guilty not using it and it would motivate us to exercise more.

This morning, Shawn broke in our machine. In a slightly different atmosphere than what he was used to at the gym. His lovely wife lounged in bed, sipping her coffee and reading her latest book, How to Tuck in a Superhero by Rachel Balducci (HIGHLY RECOMMENDED to those moms of boys out there!). His two equally-lovely little girls were perched on the side of the bed watching Daddy exercise and offering words of encouragement. (I had put on a show for them to watch, but Shawn was apparently much more interesting.)

"Dada doing? Dada doing?" (from Violet)

"What are you doing, Daddy? Is that your exercise machine? What's in your water bottle? Why are you breathing like that?" (from Clare)

The one-sided conversations continued for the entire length of the workout. Towards the end, Clare was standing alongside the elliptical, moving her arms and legs like Shawn was and she mimicked the huffing and puffing perfectly. I'm thinking that tomorrow, we're going to be locked out of the bedroom during muscle hour.

Tuesday, December 07, 2010

Charity Case

I am experiencing "all-day" sickness in the first trimester of this pregnancy. I have had some level of "morning" sickness in all my pregnancies, but it always seems to get worse. I remember with Violet's pregnancy, I actually vomited frequently, which I have not done this time. So I don't know if the sickness gets worse or if it just gets harder because each pregnancy finds us a much busier family! In either case, I am slowly starting to feel better, but am still very tired by the middle of the day and the act of creating meals is very difficult for me. The mere thought of chopping up vegetables or touching raw meat makes me gag. There are nights when I cannot even stand the smell of Shawn cooking dinner, so I stay far out of the odor's reach in my bedroom until all remnants of dinner are cleaned up. Thankfully I can usually manage breakfast for the kids and, as long as lunch is sandwiches (which are usually somewhat odorless), I am okay. Shawn has been awesome about picking up my dinner slack, so we've been chugging along fairly well. Until the week before Thanksgiving.

Shawn began a new job at the end of October, which involved four weeks of training. One week prior to Thanksgiving week and three weeks after. Three weeks in a row! I paled at the thought of three weeks by myself with the four kids. That week before Thanksgiving, the kids lived on cereal, pancakes, and mac & cheese. We did one night of Burger King (them, not me) and I thought I would throw up. How was I going to survive?

I hate asking for help. With a passion. I like to be independent. I like to know that I can do this by myself. Be strong. Be this cool mother of four kids who can handle anything thrown her way. But, in reality, I really could use a little help. Shawn is a big contributor in the school drop-offs and pick-ups since he normally works out of the home. A friend offered to bring Jamie home every day from school. I felt so bad about the inconvenience for my friend, but even that one thing made a huge difference. It meant one less trip getting kids in and out of the car and allowed Violet to actually have an afternoon nap. Then another friend organized some meals for me. Another huge help. It was a comfort to know that not every night would be cereal or pancakes for the kids. And, on those nights I just was not up to making dinner, I did not feel so bad doing something simple because there would be other nights where a prepared (more balanced!) meal would be brought to our door.

It took me a long time to get over the guilt of accepting help from people who have equally busy lives. (And I still feel a tad guilty because it's not like the kids would be dead of starvation by the time Shawn comes back home.) But then I read a great article in Faith and Family magazine (and I apologize that now I cannot find the magazine and give the author to proper credit). It was about a mother who had to rely on help from others after her husband left her. She spoke to those out there who are in a position to help those in need and to those who needed to accept help. She basically stated it was my Catholic duty to allow others to help me. That by doing so, I was helping those people enact corporal works of mercy in a very real, livable way. We can't all volunteer at the soup kitchen and feed people. We can't all set up a prison ministry or visit nursing homes and hospitals. These days, (even when not sick and single-momming it for a few weeks) it takes everything I have to keep my own children clothed, fed, happy, and healthy. But I can cook extra food one night for a family who just had a new baby. And I can babysit for a friend so she can volunteer at her daughter's school. And I wouldn't want those people feeling guilty about accepting help from me, so I need to stop feeling that way about others. So to all those who have helped out while Shawn has been gone, a big thank you from me and you are one step closer to heaven!

Wednesday, November 24, 2010

Wednesday, November 10, 2010

Revision and Reality

Things have been moving along with amending Clare's IEP and adding some services. We had a very successful meeting with her special education team, despite the nervous pit in my stomach and talking too fast at the beginning of the meeting. Her kindergarten teacher, special education teacher, and therapists all agreed that Clare is very behind academically compared to the rest of her class. Socially, she is doing a great job adjusting to kindergarten and interacting with her peers. But while her classmates are writing letters and words and learning how to read, Clare has only learned to write two letters and can only recognize about five letters (although she can rote spell her name out loud, she is inconsistent when it comes to actually recognizing the individual letters in her name). In our opinion, we have not seen any progress in Clare academically. One of the ABA specialists for the school was at the meeting as well, and she agreed that ABA would be a great way to help Clare learn her letters and numbers and is eager to start working with Clare. We have another meeting scheduled at the end of this week to formally amend Clare's IEP to include more academic goals and add ABA services. I am excited to see what progress Clare makes after beginning ABA services. And, after this meeting, I felt like we were finally working as a team to help Clare, and it is not her parents versus her teachers. I definitely felt much better leaving the meeting!

With all the concern over Clare's academic progress, I find myself sinking back into a Williams syndrome hole of pity at times. I have often said I wish we could put Clare back into her special preschool bubble, but that is for my sake, not hers. In that bubble, I know the other parents aren't looking at me wondering what the heck is up with that girl. In this new mainstreamed life, I am not so confident that the other parents aren't asking those questions. In reality, they probably could care less, but I still feel like we scream DIFFERENT!

Clare went to her first kindergarten "girls only" birthday party. It was a pony party at a barn, so I figured there would be some riding involved. Clare was beside herself with excitement about the birthday party and riding a horse. She was wound up by the time we arrived at the party and was running around everywhere. The other girls at the party were a little more subdued, but I couldn't fault Clare her excitement. The owner of the barn was a little gruff and had so many rules for the girls - no running, no screaming, no yelling, no feeding the horses, don't walk behind the horses, etc. I could barely remember all the rules, never mind expect Clare to remember them. When it came time to riding the ponies, I asked the woman if I could walk beside Clare in the ring (there was no one doing this, just someone leading the pony). She told me that was not possible, so I explained that Clare has some balance issues. She basically cut me off and said, "She'll be fine, we've done this before." And Clare was fine. She did a great job and loved every minute of it! She couldn't wait for her turn again. I, on the other hand, fought back tears and had to walk away for a moment before I really lost it. A couple of parents asked me if I was okay. My neighbor (whose daughter is in Clare's class) was very sweet and gave me a hug and told me that Clare was loving it and doing fine (she was the only parent there who knows about Clare). I know I looked like a crazy mom crying over my daughter riding a horse, but I was so full of mixed emotions. Scared of letting go and trusting that Clare would be okay (in the hands of a stranger who brushed my concerns aside). The realization that, although Clare had a great time at the party, none of the girls really played with her, and she was my buddy throughout the party. And joy that Clare loved every minute of the party.

I have to remind myself that it's not my perception of Clare being left out that counts - it's HER perception that really matters. And she does not feel left out. Maybe she will later in her life. I don't know. But right now, she enjoys being in the moment and does not worry about what others think. Clare does not hide her emotions. If she is happy, you know it. Excited, doubly so. And upset, triple! I know I could take a few lessons from Clare.

Wednesday, October 06, 2010

Settling In

We have a month of school under our belt and are fairly well-settled into our school routines. As much as I miss the laziness of summer mornings (when I didn't have to drink my cup of coffee while running around the kitchen making breakfasts, packing lunches, and getting kids dressed and out the door to school), I love having a routine to our day. I love knowing that there will be chaos for about two hours until Jamie and Clare are at school, then we are more leisurely for a couple hours, followed by the lunch rush, then another break during the "quiet time" in our house before all four kids are together again in the afternoon for the pre-dinner rowdiness. It's all nice and predictable, and I am confident I can get through the crazy parts because I know those quieter times are coming.

We have received Jamie's progress report, and it was superior. He enjoys his new teacher, is thrilled that his class includes some new students (last year, there were only 11 children in his first grade), and is excited about learning to play the recorder this year. He chose a yellow recorder (which is actually quite ugly!) and likes to study the accompanying book so he can figure out new notes to play before he learns them in music class. I am still interested in getting Jamie involved in piano lessons, but I want to see what the indoor soccer schedule is like before we commit to another activity. The fall outdoor recreational league has a few more weeks left, so indoor is still a month away.

I attended the Curriculum Night at Simon's preschool last night. The teacher went into more detail about the day's schedule, the themes of each morning, the activities the children could look forward to. I know Simon is doing well in school. He loves it! There are still children who sob as they enter the classroom, but Simon is so eager to go and asks every day if it's a school day. The children have paper hand prints on the wall and, whenever they do a kind deed, they get to put a sticker on their "Helping Hand." Proud mama saw last night that Simon had four stickers - the most in his class! We have our challenging moments with Simon at home, but I am glad that, at school, he is that sweet boy I know is in there somewhere! Simon is looking forward to his first chance to be the Star of the Day (special helper at school), which happens to coincide on October 28, the Feast of St. Simon and the preschool's Halloween party. (And Jamie's school's Pie and Bingo Night - Simon believes his amazing parents planned all this just for his feast day when the other kids only got to choose a special dessert on their feast day. You try explaining coincidence to a 3-year old.)

Clare loves kindergarten. She is making new friends and has been invited to her first birthday party (a "pony party" where she will get to ride a horse for the first time - she cannot wait!). I wish mom and dad were as enamored with kindergarten. After my panic attack following the Open House, we formulated our plan. I spent 40 minutes on the phone with a fellow WS-mom and received so much good advice. That led us to do three major things - send a formal letter to the school requesting some evaluations and testing (among other assessments, the district bypassed giving Clare the kindergarten assessment since she had an IEP - which, now I know, was a mistake to just okay that), make an appointment for Clare to do the three-day Williams Syndrome Clinic out of Children's Hospital Boston in November, and finalize our plans to take Clare back to Dr. Mervis in Louisville, Kentucky over February break. Shawn also talked to Dr. Mervis over the phone, since February is a long way away and we need to see how Clare is doing now. She was able to give him some insight in where Clare should be academically as opposed to where the school expected her to be. So we have our appointments with the WS-experts scheduled, and we are waiting to hear back from Clare's school about a meeting date with her special education team to discuss Clare's progress and where to go from here.

After hearing Dr. Mervis' thoughts and talking to other parents, I am much calmer about the status of Clare's education, but I still feel there is more we can be doing for her. At home, our primary academic focus is to engage Clare in wanting to learn her alphabet and be excited about recognizing letters. I purchased an alphabet music CD, alphabet charts, and Leap Frog's Letter Factory DVD (thanks for the recommendation!). I hope that by immersing Clare in a variety of ways (auditory, visual, and tactile), we can make some progress. Clare learns differently than typical kids do. I see this every day, especially since Simon could recognize every upper case letter by the age of 2.5 and can recognize all the lower case ones a year later (and he learned this by us reading little ABC books together - nothing fancy or creative). That is our main point to the school - that Clare learns differently and needs different strategies to help her learn. This is where I think Clare's IEP, and the school, is failing her right now. There is nothing in her IEP to address her alphabet. When I question that, the answer I keep receiving is that it is part of the standard kindergarten curriculum, so it does not need to be in her IEP. When I questioned the special education teacher again about this, she stated that Clare will be "exposed" (her word) to it in the curriculum so I shouldn't worry. I argued that exposed does not mean Clare will learn it. Clare is exposed to Mandarin Chinese when she watches Ni Hao, Kai-lan but she certainly is not learning Chinese. So the next step is a meeting at the school, and we will stay tuned!

Friday, September 17, 2010

Mainstreaming is NOT for Wimps

I attended the open house at Clare's school. I admit I was not in the best frame of mind going there since I had two sick kids at home, a husband suffering an allergy attack, and I myself had just gotten over a virus and was still pretty wiped out. Yet I did not want to miss Clare's first open house in her new school. I could manage the hour. Or so I thought.

Clare's kindergarten teacher passed out the children's folders of work completed in their first nine days of school. Included in the folder was an outline of what they would be working on literacy-wise in their first twelve weeks of kindergarten. As I quickly thumbed through the pages, I mentally thought "skip this, skip this, skip this, Clare is not there yet." It was all about lower case letter recognition and formation. Clare does not even recognize her upper case letters (except C, for obvious reasons), never mind writing any of them. How is she going to start learning lower case?

The teacher described their day, what they are working on, learning to sight read words, writing letters, writing their names, and simple math concepts. When she said the word "math," my brain went into panic mode again. Math? Clare can rote count to ten, but still has difficulty looking at objects and counting them. She often loses her place or just continues to rote count, even when she's passed the number of objects. Forget about math - she does not recognize or write any numbers. At this point, I admit I tuned the teacher out for the most part and concentrated instead on not crying. Which involves a lot of jaw-clenching, biting the inside of my cheek, and looking at whatever is hanging from the ceiling.

At the beginning of her presentation, the teacher had quickly introduced one of the reading specialists for the school. Aah... there was someone I would love to talk to. So after the presentation was complete, I made a beeline for this woman. I introduced myself and explained that I knew Clare would not be reading by the end of kindergarten. So what happens then? I babbled some stuff about her IEP, getting some extra reading services, blah, blah, blah. The woman was very kind, but she looked at me as if I was neurotic. As in, what is wrong with this mother who nine days into kindergarten is already freaking out that her daughter cannot read? I told her I knew I was jumping the gun a bit, but I wanted to give Clare the best chance to keep up with her classmates the best I could. I told her how we purchased an alphabet and phonics music program to work on with Clare at home. Clare is not really even interested in learning her letters, so her private speech therapist and I thought a program based on music would spark her interest. At this point, the kind lady (who really was kind, but who obviously thought I was a fruitcake and was just placating me by this point) told me that she really only worked with students in grades 1-5, that she had many students who needed help, and if Clare needed help once she was in first grade, she would see her then. Then she told me that she had met Clare briefly because her son was in Clare's kindergarten class and that she thought Clare was a doll. She then excused herself to talk to the teacher about her own child.

Now I really wanted to cry. I had no idea this woman was in the classroom as a parent, not as a specialist. The kindergarten teacher had introduced her to the class, so I assumed she was there to answer any questions about reading. Now she would have this idea in her head of what kind of parent she thought I was. (Add to that my already sensitive self-consciousness over Clare's school speech therapist witnessing both Clare and Simon having a temper tantrum, complete with hitting in each other, in the school hallway two days ago.)

Mainstreaming... that's the term for what we are doing with Clare. Inclusion. There's another term. My term is "trying to be as normal as we can get." But none of it's normal. None of it's typical. None of it's easy. I have so many doubts now about whether Clare really can be included. I know deep down in my heart she can, she will, and I feel (hope, wish, want) this is what is best for her. And I know we are only nine days into the process. I just never knew it would be this hard. I want to put Clare back into her safe, little, special ed preschool bubble - where she loved school, the teachers loved her, I had no idea where Clare stood skills-wise as opposed to the rest of her classmates and it didn't matter because Clare was progressing as Clare needed to progress. Not as the teachers needed her to progress or how I needed her to progress.

I had a good cry in the car on the way home from the open house. In the morning, Shawn and I discussed it, and I had another good cry. I hope all the crying and feeling sorry for myself is now out of my system for the time being, and we can start figuring out what we're going to do about all this mainstreaming stuff.

Wednesday, September 15, 2010

Facebook Makes Us Lazy

"Facebook makes us lazy." -- the wise, wise Kerry F.

Lazy, impersonal, idle, procrastinator, the list goes on and on.

When I read Kerry's words, it instantly hit me that she was right - Facebook makes us lazy. I am extremely vulnerable to being sucked into the vacuum of Facebook as soon as I click the link on my Favorites tab. I don't think there's anything wrong with Facebook or other social sites in general, but I believe that Facebook makes us lazy when it comes to our personal relationships.

I saw a good friend today for the first time in about two years. Put it this way - she had never met Violet (who is almost 20 months old). She lives about twenty minutes away, we have children the same age (we have older children with the same name!), and she has a daughter with heart disease as well. We should get together more often. As we parted today, she commented, "Thank goodness for Facebook." And she was right as well. This is where Facebook has some value - we have been able to stay in touch, keep somewhat up-to-date on each other's lives, and discuss books (a passion we share). But it also made me sad that sites such as Facebook make it so easy to stay connected via the internet that we don't make more of an effort to stay connected in person. To sit across from each other in a room and catch up while our children get to know each other by working on puzzles together (and sweet puppies shower us with affection!). No amount of status updates can keep a true friendship going. I am guilty of getting so swept up in my busy life with busy schedules and lots of busy things to do that I don't stop for one morning to forego all that busy-ness and just BE. I am glad we both made the effort today to see each other finally!

I feel as if I am at a turning point in my life in some small way (getting all philosophical on you now). I have been evaluating my life, my values, my priorities, my reactions and emotions, and trying to take stock of what's really important and of true value in my life. There is nothing earth-shattering I need to change, but there are lots of little things that I want to work on. Having fun and unwinding on Facebook is all fine and good, but it has its place and I want to make sure it's a small place in my life and not let it be a poor substitute for my life.

Tuesday, September 14, 2010

Left Behind

IEP goal: By June 2011, Clare will be able to ascend stairs with a reciprocal pattern without a rail and descend stairs with a reciprocal pattern with one rail with verbal cues.

There is a lot of hurrying that goes on in our house. Hurrying to get out the door to bring three kids to three different schools. Hurrying to pick children back up, make lunch, and get the little ones down for naps before it's time to get Jamie from school. Hurrying to make it to soccer practice on time (since Jamie's new coach is a little bit of a... drill sergeant). Hurrying to clean up, take baths, brush teeth, tuck everyone in. There are also a lot of stairs in our house, so a good portion of this hurrying is done going up and down the stairs. Even when we are not in a rush, the boys naturally fly past Clare on the stairs, and I often find myself doing the same. I will brush past Clare as she slowly makes her way down the garage staircase, gripping the handrail one foot down the second to join then onto the next step. I buckle Violet into her car seat, buckle Simon in, then I will go back to offer Clare a hand to hurry her descent down the stairs.

The other day, I was going down to the basement to switch some laundry from the washer to the dryer. Clare was ahead of me making her way down to the playroom. I went to pass her so I could get my chore done when I realized what I was doing. Was I in that much of a rush to get to the laundry that I could not wait for two minutes while Clare navigated the stairs? Did we always have to rush past Clare, leaving her behind by herself? Would she forever be last, everyone passing her by without a second thought?

I know - heavy thoughts on walking down the stairs. But it reminded me that there is value in taking our time. To Clare, she could slide down the stairs on her bottom, making it from top to bottom in about 20 seconds (and sounding like tap-dancing hippos doing so). But she is working so hard at home and at school to ascend and descend stairs by herself. Right now, she does so by holding the railing with one hand and carefully doing her one step with both feet at a time. Her next goal will be to do it reciprocally (as in one foot on one step, the opposite foot to the next step, you get the picture). Then working her way to going upstairs without holding a rail, and downstairs only holding the rail (right now, she is very unsure about going downstairs without holding a rail and someone's hand - she will do it, but she goes very cautiously). The ultimate goal someday is that Clare can go up and down stairs carrying her schoolbooks.

It still gives me some heartache when I think of all the things that the majority of our bodies do and learn naturally, but that Clare has to work so hard at learning. My heartache is for her that it just can't come easy for her. But just as there is value in taking our time doing something, there is also so much value in working hard to accomplish something. Even something as mundane as walking up and down the stairs. I know Clare is going to be left behind in some way or another time and time again. But I don't have to do that to her. I can walk with her down the stairs and hold her hand to make her descent easier for her. Or I can walk behind her, be patient, and have the chance to marvel at her determination in doing this on her own.

Fickle Fickle Lady

It's been a month, and I just don't feel as if my journey in this blogosphere is done yet. I have stopped myself so many times from jumping on here to write something. And then I find myself wondering why do I stop myself?? Maybe no one will read me anymore, but I find that I do still need this outlet. I will be far from diligent about it, and I will stop making apologies for my neglectfulness. Shawn is always telling me I need to lower my standards (when it comes to the state of the house, the size of the laundry pile, the gourmet-ishness of the dinner). I disagree. It's not that I need to lower my standards, it's that I need to be okay with myself if I don't meet my own standards. So here we go again...

Monday, July 19, 2010

In Session

We were at the convention "in session" for three days. Each day consisted of a morning keynote speaker then three information sessions (with multiple sessions to choose from for each time slot). Day One, we did everything. This is what the day consisted of:

Get everyone up, dressed, and to the continental breakfast. Drop Jamie off at the bus area for his school-age day camp. Drop Clare and Simon off at a different room for the preschool day camp, Shawn drop Violet off at another room for the baby camp (with me staying well out of the way so Violet would fuss just a teeny bit instead of a WHOLE LOT). Grab a second cup of coffee before securing seats for the keynote speaker. After the speaker, 15-minute break (with the familiar ladies room line that lasts the entire break), then off to Session One. Mad dash to the childcare rooms to pick up the three younger ones (Jamie stayed at the day camp off site and joined us again before dinner). Find somewhere to eat lunch, order lunch, coax the children to eat quickly because we only had an hour total to pick them up, eat lunch, and drop them back off. Which is not a lot of time in a big hotel with hundreds of other people trying to do the same thing (poor planning, convention people)! This time, Shawn and I divide and conquer - I bring Simon and Clare back to their room, Shawn is on Violet-duty. (More fussing from Violet than in the morning, but she still goes into childcare fairly well for a 18-month old who has never been in daycare, with a "strange" babysitter only once, and usually won't even hang out with the grandparents without looking around for mom). Arrive at Session Two a little late because the session starts at 1 pm, but the childcare rooms do not reopen until 1 pm (again poor planning, convention-people!). Session Two, 15-minute break, Session Three. Keynote speakers are incredible (made me cry two mornings in a row, dang it!). Sessions are chock full of good information, but now I am on brain overload - mentally-, emotionally-, and physically-exhausted. After Session Three, breathe a big sigh of relief, have about 10 minutes to do nothing, then it's pick-up time for all four children. Four children are extremely excited, wound-up, overtired, and fussy (all at the same time!) about their days. Enjoy about 30 minutes together before it's time to get ready for the evening event (which everyone is eager for because it not only includes horses, carousel, zoo, train ride, dinner, and banjo music, but also Auntie Erin!!), but everyone is also very tired and a little high-strung.

When Day Two dawned, I was already done. The sessions were so helpful and informative that I hated to miss any, but by the afternoon of Day Two, I needed a break. I went with Shawn to the keynote speaker and sessions one and two, but skipped the third session. I went back to the hotel room and took a nap (Shawn went on to his "dads only" session and the kids were all still at camp). By Day Three, Shawn was done, too. Since it was a Saturday, we had already planned months ago to only put Violet in childcare that day, and Erin would take the other three for the day. Erin picked them up for the Science Museum, but we did not put Violet in childcare. She had successfully lasted the first two days, but I think Violet was done with the whole childcare scene and was extremely fussy and clingy. Shawn and I agreed to skip all sessions on Day Three. Instead, we took Violet with us to the Vatican Splendors exhibit at the Missouri History Museum. Incredible! I am so glad we did this. The exhibit showcased art and artifacts from the Vatican's collection. Many pieces have never been outside the Vatican before. We saw amazing items, such as relics from Sts. Peter and Paul (actual pieces of their bones), Michelangelo's art and tools used in work on the Sistene Chapel, Pope John Paul II's chalice and patten, and the 16th century red cope worn by St. Charles Borromeo. We spent two peaceful hours at the exhibit (Violet cooperated by taking a nap in the stroller during the majority of this), ate lunch at a great little Mexican place, then found Gooey Louie's, a St. Louis bakery devoted solely to gooey butter cake. If you know me and my family well, you know that gooey butter cake is a staple in our diet! We were able to recharge during the day, then in the evening, Erin generously babysat in our hotel room (with pizza and a movie), and Shawn and I enjoyed the ending convention banquet minus children.

The keynote speakers we heard were Dr. Ray Guarendi (parenting "expert" - although he scoffs at that title - and father of ten children) and Gary Guller, the first man to climb Mt. Everest with only one arm. Not only did he reach the summit, he led an expedition of the largest ever cross-disability group to reach Mt. Everest Base Camp. Both men were exceptional speakers. Dr Ray had lots of good advice when it comes to parenting and discipline, but Gary Guller made me realize that we can't give up on our dreams no matter what life throws our way. That our kids CAN do anything, and it's not up to us or anyone else to tell them they cannot. Gary Guller was beyond amazing when it comes to being inspirational.

As I stated, the convention was overwhelming, but it was worth the trip. I still have not re-read and digested my notes and the binder of slides from the sessions we attended. I have a list of potential "issues" to look into and check off my list. We gained some insight into what's going on in Clare's brain, learned new techniques to help her cope with stress and anxiety, discussed ideas for a sensory diet, and added goals to her IEP, to name a few. We are very glad we made the trip to St. Louis (both in visiting family and for the Williams Syndrome Convention), but it always sweet to be home again!

Saturday, July 17, 2010

Meet Me in St. Louis

We are back home after a two-week road trip. (We called it a vacation, but it was only semi-relaxing!) Every two years, the Williams Syndrome Association holds a national convention, and this summer it was in St. Louis. We had not attended a convention yet (Clare was too sick in 2006, and 2008 was held in California, which was too far away for us), so when we heard that the 2010 convention was to be in St. Louis, we knew we had to go. My dad is from St. Louis, and his family still lives out there, plus my older sister is currently living in St. Louis (an older sister who my children love dearly and who they have not seen since Christmas). Plane tickets, rental cars, lugging gear around was too much to handle, so a road trip it was! We journeyed in three legs both ways - our home to my younger sister's in Philadelphia (where we spent the Fourth of July), then Philly to West Virginia (where my grandparents live), then on to St. Louis. On the way home, we did it in reverse! They were six long days of driving (about 50 hours total spent in the car), but the kids did fairly well! They are little troopers, that's for sure.

So the convention... many people told us that once you attend a convention, you will never miss one again. Frankly, I am not sure I agree with that! There were many wonderful things about the convention, but it was also so overwhelming. I am not sure what I expected exactly, but this little story is a good illustration about how it was way more than I could have imagined. Our third day of driving was the worst. Everyone was sick of being in the car. The last two hours of the drive, Violet was so upset about everything, that she was making herself sick. We ended up pulling over and switching the seating arrangement. Jamie and Clare sit in the same type of car seat and so do Simon and Violet, so we can do all kinds of seating arrangements without moving car seats. Violet would only calm down if I rubbed her head, so I squeezed in the rear row between Clare and Violet. When we finally pulled up at the Hilton in St. Louis, that's where I was - wedged in the back between my girls. Shawn pulled up to the valet, and we all waited while he went in to register (you quickly learn at hotels NOT to unload all the kids until you're sure you're staying put). As we waited, I saw this little face pressed against the glass from inside the hotel. It was a boy, probably a little older than Clare, who without a doubt had Williams syndrome. After a l-o-o-o-ng two hours, seeing that smiling, friendly, oh-so-familiar face doing something I have seen Clare do so many times instantly brought a smile to my face. I thought, that's so cool - there's another child with WS inside that hotel! When Shawn came back out, I eagerly told him about the boy. His words to me were simple: "Tree, you haven't seen anything yet." I asked him what he meant, and he said, just wait.

After unloading the children, the luggage, and the gear, we entered the hotel lobby. And Shawn was right. I hadn't seen anything yet. The lobby was full of faces, just like the one I saw pressed up against the glass. Babies, kids, teenagers, adults - all with Williams syndrome. They were everywhere. We have attended numerous WS get-togethers, but never with this size crowd. It was unbelievable. It was also quite overwhelming. It was in-your-face Williams syndrome. And I am not sure I was ready for that.

(to be continued)

Sunday, June 27, 2010

Clare

So much to say, so little time about our Miss Clare Bear! Clare is a proud preschool grad. I thought she would have some trepidation or anxiety about preschool ending, but either she does not fully grasp it or truly is okay with it. Her graduation day was full of songs, pictures, and treats. Her teacher cried as she handed out the diplomas which made me cry (totally ruining my punk look with my purple streaks - bad girls don't cry!). Clare has been with her teacher, Miss Karin, and assistant teacher, Miss Kelley, since she started in March 2008. They have watched her blossom from almost a baby into a big girl. They have been there with her as she learned to talk, run, climb, toilet-train, and spell her name. They should be proud at how much Clare has learned in the two-plus years in their classroom.

Clare will still do summer session at the end of July (she will miss two weeks because we will be on our big road trip to the National Williams Syndrome Association Convention!), but summer school is going to be in a different school (hopefully Clare will be in Miss Karin's classroom, though) with different classmates. In Clare's mind, she is moving on to kindergarten!

We had Clare's IEP meeting (minus Clare), in which we met the special educator for Clare's new school as well as the kindergarten teacher. The meeting went very well - we agreed with all the goals and were able to negotiate some extra PT sessions. Then we had a second non-IEP meeting at the new school (this time, with Clare) with the new staff - OT, speech, nurse, and special educator. We met the principal and assistant principal as well. We were able to go over Clare's medical and educational history as well as our concerns and goals in a more relaxed setting with Clare's new team. Again, we thought it went very well. Her new school is one of the best in the district and very small. Clare will be in a half-day morning kindergarten program. Clare and I attended her kindergarten orientation a couple weeks ago. She was thrilled to visit her new school again. We took a tour, met more teachers and staff, and played some games to get ready for kindergarten. Clare had a chance to explore the classroom, spend some time with the teacher (who I like so far), and meet some of her potential new classmates. She knew a girl from her preschool, a boy from the childcare room at the gym, and the twins that live down the street from us. We know Clare is in the morning class (we had it put into her IEP to be sure she was placed in the morning class), so we hope that at least one of the kids she knows is in her class as well.

Clare performed in her dance recital last weekend. The younger children in the ballet school danced in their production of "The Little Mermaid." Clare's petite ballet class were little fish, and they were so cute! Clare did a great job - she isn't able to perform all the moves because she has trouble with her balance, but she tried so hard, paid attention, and was not scared by the big stage, bright lights, and scores of faces! Her favorite part was being allowed to wear make-up. She talked for weeks about the make-up! Clare absolutely loves her ballet class. She is all about the music and dancing and girlishness of it. I think it is good for Clare because it helps her with her strength, endurance, and balance without being too strenuous. When Clare took swim lessons (something she also loved), the 30-minute class wiped her out for the rest of the day. Ballet is not like that, so it's a better choice of activity when it comes to Clare's endurance level. She is taking a break for the summer, but will resume ballet in the fall.

Health-wise, Clare is doing well. She had her recent endocrinology appointment, and once again, she has shot up! She has gone from not even being on the height chart to 10% a couple years ago and now she is at 19%. She is still slow on gaining weight, but has become so long and lanky. (Or lean and mean!) We recently went down to Children's Hospital for a renal ultrasound (no results yet - they are checking for any stenosis in her renal arteries as well as any issues with her kidneys because of her continued high blood pressure) and will go back to Children's in a few weeks for some dental work. Clare only needs a couple cavities filled, but because of her complicated cardiac history and increased anesthesia risks associated with Williams syndrome, the pediatric dentist wants her dental work done under sedation at Children's (they always want that cardiac OR back-up, just in case).
We are finally attending our first national Williams syndrome convention this summer in St. Louis and are so excited to go. Over the past five years, we have met many local families and been at gatherings with multiple children with Williams syndrome. I cannot imagine how it is going to feel to be surrounded by hundreds of people all raising children with Williams syndrome. We will also finally have a chance to meet friends in person that we have only chatted with online or on the phone for years. We are going to make a vacation out of it and visit both of my sisters, my grandparents, my grandfather, and aunts, uncles, and cousins along the way and in St. Louis. It is going to be one fun trip!

Friday, June 11, 2010

Construction Photos

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

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


April 13 - Our house before construction began.


April 13 - The excavator begins digging.


April 28 - Framing begins.


May 11 - Working on the roof and siding.


May 28 - Master bedroom.

May 28 - Master bath.

Monday, June 07, 2010

Simon

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

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

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

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

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

Excuse List for Blog Neglect

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

Tuesday, May 18, 2010

Welcome to Neverland

Our Neverland Birthday Party

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

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


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


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



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

Wednesday, May 12, 2010

Violet

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

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

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

Monday, May 10, 2010

Snatches of Conversation, Part 2

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

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

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



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

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

Wednesday, May 05, 2010

Snatches of Conversation

(In the car)

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

Simon: Just deal with it.

Sunday, May 02, 2010

Happy 3rd Birthday, Simon!

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

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

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

Thursday, April 22, 2010

Chance Encounter

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

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

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

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

Tuesday, April 20, 2010

Beginnings

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

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

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

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

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

Wednesday, April 07, 2010

Fresh Air

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

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

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

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

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

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

Wednesday, March 31, 2010

My Girl is Five Fingers!

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

Friday, March 19, 2010

Dress-Up Diva

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

Wednesday, March 17, 2010

Leprechaun Traps

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

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

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

Wednesday, March 10, 2010

My Old Friend Spring

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

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

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

Tuesday, February 16, 2010

My Guardian Angel

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

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

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

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

Monday, February 08, 2010

Penguin Plunge

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

Friday, February 05, 2010

End of the Week Daybook

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

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

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

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

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

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

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

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

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

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

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

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

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

A picture I am sharing





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

Thursday, February 04, 2010

Plans

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

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

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

Saturday, January 30, 2010

Happy 7th Birthday, Jamie!

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

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