Batter Up!

S~ So as Teresa mentioned in an earlier post, we have officially entered the organized sports stage of life and, with that, I have officially become a "coach." Which I kind of chuckle at considering that, those of you who know me, I'm not what you would call a sports guy. Anyway, today was opening day for our Little League group, and it was a ton of fun. I am really enjoying this because it is something that Jamie and I can do together. I had no idea what opening day was going to be like except that we were going to be playing our first game and that we had to be there by 8 am. After a long restless night at the hospital (see previous post), the early morning was going to be the toughest part.

We got there with a large Dunkin Donuts Toasted Almond Coffee in hand and immediately handed out the jerseys and hats. Once everyone was ready, we were brought to one of the bigger fields to line up. They were going to have us all run out team by team. Jamie thought this was pretty cool, especially because we were the first team to go out (although he was a little disappointed because he thought we were going to be playing on the local pro-minor league baseball field). All the teams ran out onto the field according to age of the players, so the major league players were last. As these 12- and 13-years olds were coming out, I could hear Jamie and his teammates make comments like, "We have to play those kids??," "How come they are so much bigger than us??" One of the coaches was in the service so when he ran out in full fatigues, all Jamie said was, "Oh man, they have a soldier!" The other coach and I had to reassure the kids that we were not playing all the teams, just the t-ballers.

After the opening ceremony, it was Game Time! Jamie did great. What I noticed was his attention to the game. He was always in the ready position and focused on what was going on. Also, he was a social butterfly. At one point, he was covering second base, and, I tell you, that was the place to be! Every kid who was on second got an instant friend to talk to. It was like every kid was Jamie's best friend, and these were kids on the other team that Jamie never met before. He was also great with cheering on his own teammates. When we were up to bat, you could hear Jamie rooting everyone on until it was his turn. It was a really great day!

It Got Us Again

Those blasted wee little germies landed Clare in the hospital overnight last night. The boys started to recover from the virus and were up and about and eating and drinking again, but Clare just could not get over the hump. By yesterday morning, we could tell she was getting dehydrated fairly quickly, but resisted our efforts to take in fluids. After a visit with the pediatrician, it was decided that the best course was to admit her into the hospital overnight for fluids. As much as I hate doing this to Clare, we knew it was for the best. Dehydration is a slippery slope with Clare because of the condition of her blood vessels, and it was a slope she was rapidly sliding down.

Aaahhhh... the hospital. The nursing staff was awesome and made sure we were comfortable and left us fairly alone, but there is still the trauma of putting in the IV (probably our worst experience yet with this because from the moment I laid Clare down on the bed, she turned into a little wildcat - rearing off the bed, trying to bite me, screaming bloody murder) and the whole mind-numbing fatigue of being in the hospital. Last night, as we were shuffling kids around, arranging for my mom to come up in the morning to help out with Simon (since it was opening day of t-ball and Jamie and Shawn had to be at the field from 7:30-11:00am), and generally trying to make some sense out of the chaos, I kept wondering if we made the right decision. Maybe Clare would have been fine by that evening. Maybe after a good night's sleep, she would have perked up and drank something for us. Maybe, maybe, maybe. But then I keep reminding myself that dehydration is not something we want to fool around with. Chances are that Clare would have been absolutely fine. But who wants to take that chance?

So we endured our short trip to the hospital. Clare received fluids overnight, did get a good night's rest (I wish I could say the same for Shawn, who stayed overnight with her!), and woke up this morning feeling so much better. She asked to eat, ate more than she normally does in the morning, and we were able to be discharged by 10am. Her bicarb levels were still low and some of her other levels were high (meaning she was still not fully hydrated), but since Clare's temperament and energy level had done a 180 overnight, the doctor felt comfortable sending us home. In retrospect, I think we made the right decision despite the hassle and exhaustion. I feel that Clare was just at a point where she did not have the strength or energy to recover on her own from the virus. She needed a little extra help. Now we have our smiling little girl back (who is busy upstairs mock-battling with her older brother with the balloons he picked out for her).

Oy!

The title sums it all up. What a day! After Shawn and I battled a stomach virus the last two days, the kids all succumbed today. They fought the good fight, but alas, were no match against the wee little germies (imagine that in a Scottish accent). We won't go into all the gritty details, but imagine doing piles of laundry, scrubbing stains out of the bedroom carpet (don't even go there), and a weak, exhausted, running on 4-hours of sleep mommy (not to mention the tired daddy who had to get some work done today after skipping out the last couple of days).

My positive outlook is that I've had lots of time today to snuggle on the bed with Jamie and watch "Toy Story," snuggle on the couch with Clare and read lots of Elmo books, and snuggle in the glider with Simon rocking him to sleep.

Signs

Yes, I am a dorky believer in signs. I am one of those optimistic people who truly believe that everything happens for a reason. We may never know the reason of certain things while we live on earth, but God's plan will unfold once we are with Him. Someone once explained it to me like this, and I thought it was a beautiful and easy-to-grasp concept. God's plan for our lives is like a gorgeous embroidered quilt. However, we can only see the back of the quilt. The colors are stunning, we can see some glimpses of what the overall design is, but mostly we see a lot of knots, crisscrossed threads, and general chaos. However, once we are with God, the quilt is flipped over and we finally see God's ultimate, perfect design. It was always there and it's the same quilt, we are just looking from a different side.

My uncle Steve was recently in Vienna, Austria. While there, he toured a local church. In an alcove were two female statues. The tour guide explained who the two saints were - St. Clare and St. Therese. Steve was struck that Clare's two patron saints (her full name is Clare Therese) were together in this one alcove. He snapped some photos to share with us. It's little signs like these that remind me that God is watching out for our Clare. And that our family watches out for us, too. Thank you, Uncle Steve, for thinking of us and taking the photos!

Showcase

Make an on-line slide show at www.OneTrueMedia.com

Innocence

I hope you always find unbridled joy in life.

I hope you never grow too big to climb into my lap for snuggles.

I hope you always wake each morning eager to see what the day brings.

I hope you never feel that you are insignificant or worthless.

I hope you always spread your infectious charm to those around you.

I hope you never stop coming up to me and asking, "Hug me?"

I hope you always know how much you are wanted, treasured, and loved.

Spring Fever

It's so cliche, but we really have spring fever over here. It's been (knock on wood) a little over a week since our last snowfall. The snow is almost completely gone from our front and back yard, and, yesterday, Jamie and I raked up the last of the leaves and uncovered our sprouting daffodils. We've spent the last three evenings grilling, taking walks, and getting Jamie started on riding his bike without training wheels. Jamie is signed up for baseball at the end of the month, and he is thrilled to practice catching and throwing with Shawn in the evenings now. I am a little wary of this new phase we are entering - Organized Sports. I have always felt very strongly about sports (or any other activity) not running our lives. Jamie is only 5 years old, but it's amazing what is out there for kids these days. And the amount of time and commitment involved. A friend was telling me about her daughter wanting to do cheerleading and, in one month, it is almost every single night. And her daughter is only 5 years old! Even Jamie's baseball is going to be one night and one weekend afternoon per week. To me, that is the max I will allow on one activity. I am cautious about entering the stage of being a "baseball mom."

Clare is into her second week of preschool now. She has done remarkably well. I am thankful my kids are fairly adaptable children. Clare is eager to see her teacher in the morning and walks in with Miss Pam without a fuss. She is always happy to see me or Shawn when we pick her up, but her teacher reports that she is enjoying herself. My one concern is that when I picked her up yesterday, she was exhausted. It was her day of OT and PT, so that may have contributed to her fatigue. But her face was ashen, and she just looked terrible. Normally, we go right home from school, do lunch, and have a nap. But Simon had a doctor's appointment (yup, another eye infection and fluid in his ears - no ear infection yet), so we were still out and about. By the time we got home, Clare was a wreck. We're obviously going to keep an eye on it for now.

Additional note - So, of course, I started writing this post mid-week and life takes over. Now it is Sunday evening and I am finally getting around to finishing it. Baseball is officially starting this week, and both Jamie and Shawn are super-excited. Our yard is finally snow-free. Clare LOVES to play outside. It is a new experience for her, and she is thrilled to walk around the yard, pull moss off our stone wall, draw on my car with sidewalk chalk, and repeatedly go up and down the ramp to the shed. I talked with her teacher on Thursday about Clare's extreme fatigue after school on Tuesday. Her teacher will make note of it as well, talk to the PT, and see how Clare does this coming Tuesday. Simon's eye is back to normal, and we avoided another ear infection.

We spent the afternoon at the beach today. It was extremely windy right down by the water. Jamie, Shawn, and Simon walked along the ocean's edge, while Clare finished her nap in the car. Once she awoke, we joined them. Clare hated the wind! Her new sentence that she now says about a thousand times a day is, "Me no like it." (Her language skills have exploded, but we'll save that for another day!) As I carried Clare back from the ocean to the nearby playground, the wind was whipping wildly around us. She yelled the whole way, "Me no like it! Me no like it!" I did feel bad for Clare because she really does not like the wind, but she was also making me laugh so hard! We ended our afternoon frolicking on the playground then home to pizza and wings. I love our lazy weekend days.

Scenes From a Dance Party

American Idol Rewind

Randy: Awright Dog, Listen Up...(Applause, Applause)..Awright.Dude Listen up...That was HOT! The Clare Bear was burning it up up there, Yeah Dog you Rock!

Paula: Clare, let me start by saying you are beautiful and you look great up there. Clare what I love about you is that you are a free spirit and know exactly who you are. You really feel the music and deliver it in so many different colors. You are already a SUPERSTAR!

Simon: (To Paula)Are you done? (Pause) Clare you know I am a big fan, at first I thought this was a bit Kareoke, a little Elmo dance partyish, but then even I got caught up in it and your performance and realized that you are a superstar, you can sell millions of records and that song choice was spot on! (Applause). If I had one criticism, it would be to lose the band!

Day Two

Today was Clare's second day of preschool. It was her first day with the full class, so I was a little nervous how she would do. She had such great one-on-one time with her teachers on Tuesday that I hoped she wasn't lost in the crowd today.

When Clare woke up this morning, I told her we would go downstairs and play. She asked, "Kelly?" (who was Clare's PT up until last week). I told her no Kelly, but that she would go to school today and see Miss Pam and Miss Karin. Clare smiled and said, "Hello, Payton." This is the little boy who is the only other one in her classroom on Tuesdays. I couldn't believe that she remembered his name! And connected him with school. That was encouraging.

When we pulled up to the school, Clare walked out with her teacher. I received more big smiles and "Mama" from Clare. Her teacher relayed that Clare had another super day. They had gym class today, and she said Clare did very well with the other kids. This is one of our big concerns - Clare cannot run or jump and can get thrown off balance by kids running past her (the whole visual tracking piece that Clare needs to work on). We want her to be involved in her entire school day, but we also want her to be safe. So I was pleased to hear that Clare was able to hold her own. She also ate a blueberry granola bar and drank a small cup of chocolate milk for snack. Then asked for more! That was the most shocking bit of news. Two things that Clare has never eaten (and not for lack of offering). I am sure the teacher thought I was a little silly because I kept saying, "Really? She actually drank the milk? She ate the granola bar?" I just couldn't believe it. Food is one of our biggest battles at home. To hear that Clare did something new food-wise at school is amazing.

So we have survived Day Two as well. I promise not to detail every day of Clare's schooling! I know it's still a little too early to tell, but the transition is going so well thus far. I even enjoyed myself today with Clare at school. Jamie has been asking daily about going to the playground. Since there is still snow on the ground in our backyard, I was unsure of the playground conditions. I promised him that we would check out the playground one day while Clare was at school. That way, I did not have the added challenge of making sure Clare was safe on the playground regardless of whether it was covered in snow and ice. We have not been on the playground since fall, so I want Clare's first experience to be in optimal conditions. We met friends at the playground nearby. It was very windy, but Jamie and his buddy played for over an hour, Simon was content bundled into his stroller with a snack, and I could actually relax and visit with my friend. All in all, a good day.

First Day of Preschool

We all survived! Actually, Clare did incredible on her first day of preschool. As we truly knew in our hearts that she would. As Shawn posted earlier, we all brought her to the door, gave hugs and kisses, then Clare trustingly walked off with Miss Karin, one of her classroom aides. That was almost as hard as handing Clare over to the doctors before one of her caths. We've been talking with Clare daily about going to school, but I am not sure how much she actually gets what it is all about. When Miss Karin held out her hand to Clare, Clare took it without question and walked away with her. She waved good-bye and blew a kiss, but then did not look back. Which is how I want it. I don't want to think of Clare crying, miserable, scared to go to school. But it does make my heart ache a little that she was so trusting and willing to go with someone she only met the day before for 20 minutes. That's the nature of her personality.

Yes, I did start crying as we were walking back to the cars. I knew she would do well, but it was more the fact that she was actually old enough to be going to school that made my eyes tear up. We've been talking about this day since she first started with Early Intervention, but it was always something in the distant future. Now it is really here, and we have entered into a new phase of life with Clare. I quickly wiped my tears away, though, since I had Jamie and Simon with me. It was swim class day, so that was a good distraction while Clare was in school.

Although we do not get to see Clare in her classroom since drop-off and pick-up are outside the school building (thus why there are no photos of Clare in her classroom), we were able to talk about her day after school with Miss Karin. Tuesday is the "low" day in their classroom. Only the kids that need to go four days a week go to school on Tuesdays. In Clare's classroom, it is only her and one other boy. Clare's OT peeked in on her during the day (since Easter Seals shares the building with the developmental preschool) and reported to us that Clare was sitting in her chair working on a puzzle. She was following directions, paying attention, and doing really well. She also said that Clare enjoyed being with the other child in the classroom. I am glad Clare's first day was a quiet one at school (normally there are 13 children total in the classroom). It gave Clare a chance to warm up to the schedule of the day and the rhythm of the classroom and gave the teachers the opportunity to spend a lot of one-on-one time with Clare and get to know her. Miss Karin said they are going to start slow with Clare, but were able to get her to sit at the table for 10 minutes concentrating on a task. She did say that Clare repeatedly questioned "up? up?" to get out of her seat, but did listen when she was told not yet. Clare also had some OT and speech today. They end the school day with a reading of Brown Bear (by Eric Carle). This is one of Clare's favorite series of books, so I was not surprised when Miss Karin said that Clare found storytime very soothing.

When we all trooped back to the school to pick Clare up, she was waiting for us outside with the teacher. Clare was happy to see us ("Mama!" and big hugs), but we could tell she also had had a good time at school. She was exhausted, though, and went right to sleep after lunch (she normally puts up a stink about taking a nap - "No nap! No nap!"). Her next school day is Thursday, so our new weekly routine has begun! Below is a video of Clare walking in with Miss Karin. What a big girl!

45 Minutes and Counting...

S~Okay it has only been 45 minutes since we dropped Clare off at school, but it is driving me crazy. Teresa cried as we were leaving, and I cried in the car...it shouldn't be this tough! We have spent so much time and invested so much with our little girl that it is so scary to hand over all that responsibility to a complete stranger.

Anyway, enough of my insecurities. Clare took it great. After a hug and a kiss to all of us, she grabbed the teacher's hand and off she went. After I walked the rest of the family to the car, I was walking back to my car and I stopped at the door to her school, which was still open. I saw Clare inside taking off her backpack and jacket. I watched for a few minutes to make sure she was okay. She finally noticed me and gave a little start towards me which I had to make her stop by motioning her to stay. She stopped and gave a little wave with just her fingers. I blew her a kiss which she returned and then I left. I will remember that image of her standing there like a big girl for the rest of my life.

Happy 3rd Birthday, Clare Bear!

S~ Clare, today you turn three years old, and your mom and I could not be more proud of you. I remember when you were born and we found out you had Williams syndrome, so many things went through my head. I was nervous about what the future would hold for you, scared that you would not make it to see that future. I was selfishly disappointed that your mom and I would not have our golden years just the two of us, and I wondered how we would be able to raise a daughter with special needs. Now after three years, none of that matters. The only things that do matter are the little kisses you shower me with, the way you run to me, arms held out and yelling "Daddy" when I walk into the room. How you make everyone laugh with your silliness. You truly define your name of a light that fills the room.

I look back at all my fears and worries when you were born and, looking at all you have gone through since then, well, those fears all seem a little foolish. Your mom and I thank you for making us better people and a better couple. You have strengthened our marriage in ways we would have not been able to without you. You have forced us to know how to be strong in tough situations and to take life on a day-to-day business. So, on your third birthday, Clare, we thank you for all the gifts you have given us and those you come in contact with... We love you, Clare Bear!

Warmer Weather Wanted

Today was the day of Clare's school visit. However, Mother Nature had other ideas. We are in the middle of a huge snowstorm, so school was cancelled for everyone. Clare is supposed to have her first day of preschool on Monday, but I don't like the idea of sending her to school without Clare ever seeing the classroom or meeting the teacher before. I have not heard back from the school yet about changing our plans (perhaps no one goes in at all on snow days??). I hope we can do Clare's classroom visit on Monday instead, with her first day being Tuesday. Makes her third birthday a little anticlimactic with dropping the whole "starting school" bit but I refuse to just drop her off on Monday with no preparation whatsoever. At Clare's school, we do not get to walk her into her classroom. The teachers and aides meet us at the curb outside and take the children in. That is not going to be Clare's introduction to school. Out the car door and here you go!

Easter Photos

Coloring eggs - Jamie does the traditional hard-boiled kind, while Clare does... something else. We're not sure what she is doing.

The Easter Bunny brought rainboots, gardening tools, and lots of candy!

The Easter egg hunt was a big hit with everyone.

(You'll have to excuse my poor formatting skills. Blogger throws me through a loop every time I try to arrange my photos. It's killer on my Type A organizational skills, but what can you do.)

Quiet

All is quiet on the homefront here lately. Well, relatively so. We hosted a small Easter dinner (as compared to past years) on Sunday. Saturday was spent cleaning the house, making food, and coloring Easter eggs. Clare got in on the fun this year. She was fascinated by the idea of coloring eggs. She colored one, then discovered that cracking and peeling was more fun. We gave her her own bowl of yellow dye and let her do what she wanted. I think she's the first person to dye scrambled eggs. It was a pretty disgusting mess. Due to the mounds of snow in our yard, we held our Easter egg hunt inside for the second year in a row. The kids didn't mind, though, and Jamie easily found half of the eggs. (All those hours spent doing I-Spy books, that kid could find the needle in the haystack.)

I received a call from Clare's endocrinologist this morning informing me that Clare has flunked her six-week trial off her thyroid medication. Her TSH levels (thyroid-stimulating hormone) were too high, so she is back on her medication. The doctor called at 7:30am (one reason why I love Clare's endo is that he makes the phone calls in person - no nurse or secretary relaying information), and I was still working on actually waking up, so I didn't ask a lot of questions. I know in Jamie's case, once he failed the trial off medication, we were told he would need it for the rest of his life. I assume this will be the case with Clare as well. Shawn and I have noticed that Clare has seemed more tired and irritable lately. At first we thought it might be her heart, but once that was cleared, her cardiologist pointed out that it might be symptoms of hypothyroidism since she has been off her medication. Now that we know Clare needs to be on her medication, maybe she was starting to display symptoms.

We are in the last days before Clare starts school. I really don't know what to think. Part of me is excited for her. This is such a big milestone. I truly think that school will do wonders with Clare and that she will thrive. I also know it will be a huge adjustment. The boys take swim classes on Tuesday, and Clare plays in the childwatch room for an hour while we swim. She always does great in the room and enjoys it. But she is always so happy to see me when I pick her up - I get kisses and big hugs. I wonder how she will do with two and a half hours away from us. We have our school visit on Friday to bring Clare into the classroom. Then the big day is on Monday, her third birthday. Clare really has grown up so much over this past year - walking, talking, so much more independent. She has gone from being my baby to being a big girl. Not a toddler anymore, but a preschooler. Okay, I have to stop before I start crying!

When I get the chance to find my camera, I will upload some Easter pics.

Cardiology Update

Good news up front - Clare's next cardiology appointment is in six months!

Clare had her cardiology appointment and echocardiogram done today. It came up so suddenly (or seemed to) that I didn't even get a chance to properly freak out about it. She had a lung scan done at one of the Children's Hospital sites in Waltham a couple weeks ago. A normal lung scan reads 45-55 (cannot remember which lung is which) - Clare's measured 43-57, so she is almost at a typical output for her lungs, which is fabulous news. She was very squiggly-wiggly for the echo this afternoon. I kept threatening her that if she did not sit still, she would end up having her echos done under anesthesia in the ambulatory center. And we don't want that. Those words failed to impress her, but having two lollipops in her mouth at the same time worked wonders. Thankfully, we have the best echo tech in the universe (who has been echoing Clare since she was one day old), and she was able to get what she needed.

Clare's blood pressures and oxygen levels were great. Her weight was up two pounds from her last visit three months ago. And all her gradients measured almost exactly the same from her last echo! Truly awesome news!! Her doctor was very pleased. So much so that Clare does not have to return for six months. This will be our longest stretch ever between echos. Hopefully my nerves will last the entire length as well!

While we were at the clinic, I had scheduled an impromptu appointment for Simon with our pediatrician. He caught the lovely virus that Jamie and Clare had a couple weeks ago, but it seemed to linger in him. After a few days with a fever, congestion, and general crankiness and clinginess, it turns out that Simon has another double ear infection. (His third double ear infection in a little over a month.) We're now at the point where the doctor has brought up "the tubes." Personally, I think it's all an act and Simon just wants to have his thing. You know, Jamie has that thyroid thing, and Clare her heart thing. I think Simon is vying for the spot of the ear thing. God forbid one of our kids is (tongue-in-cheek) "normal."

[The photos are from our recent trip to the local children's museum. The kids love going to this place. Clare's favorite part was playing in the doctor's office (hmmmm... I wonder why?). She enjoyed being the medical secretary more than being the doctor. And, as you can see, even firemen go to the dentist.]

Blessings

During those moments and days when I wonder what we are doing here, I stop and reflect on the multitude of blessings in my life. And I thank God for each and every one of those. My top list today:

* An amazing family, my incredible husband, and three fabulous children.
* Friends to hang out with for hours, drinking wine, and indulging in fondue. Friends who just get me - no explanations needed.
* And the other sweetest almost-3 year old girl in the world who just makes my Clare light up. These two little girls are so precious.

IEP.... Not as Bad as One May Think

We had Clare's first IEP meeting yesterday. After more brief panic attacks about what to wear (ummm... and promptly forgot said panic attack come yesterday morning and ended up wearing my favorite pair of jeans that I wear five days a week and a comfy shirt), what we were going to insist upon having in the IEP (which Shawn and I hashed out in detail during commercials while watching the first Final Twelve showdown of American Idol), and whether or not all children would be healthy so we could leave them with their grandparents (I am pleased to say they were all healthy for exactly one day!), the day of the IEP finally dawned. This long-dreaded-oh-so-important step in the transition process was here.

For those who have never had the experience of venturing into the world of special education (and I had no clue what any of this meant before Clare), IEP stands for the Individualized Education Plan. In a nutshell, it is a list of the educational goals we would like Clare to reach by the end of the school year. It also includes a list of accommodations that Clare will need to reach those goals as well as whatever services she will need. It's a signed contract between us and the school department. Signing all the paperwork was almost as bad as buying a house.

Shawn and I were both extremely satisfied with the results of the IEP meeting. The team was great, and the IEP was thorough. I expected to go in there and help them draft the whole thing up right then and there. But the IEP was already written, we went over it in detail, then we brought up our concerns. Other than a couple sensory goals, everything we wanted for Clare was in the IEP. Including a defibrillator on site with trained staff. Hooray!

Clare will be attending preschool four mornings a week. The team felt Clare needed a fourth morning of school because of all the services she will be receiving - two units of group speech, one unit of group OT, one unit of individual OT, and two units of individual PT per week. It only amounts to 3 hours of therapy per week, but that's longer than the length of an entire school day. I was happy with this arrangement. Going in, I wanted one hour of PT, OT, and speech per week, which we got. At this point, I am not concerned whether the services are group or individual. We will see how Clare progresses and take it from there. One of the good things about Clare starting preschool at the end of the year is that she will only have about 10 weeks of school before summer. So we will have a chance to evaluate her progress, figure out what worked and didn't work, what we liked, etc. then have all that information when planning her first full year of preschool come September (and writing a new IEP). The team also felt Clare needs an extended school year or else she will regress over the summer, so we enrolled her in the five-week summer course as well. In addition to all this, we are going to continue outpatient OT with Clare's current OT, Jen, to work on Clare's sensory oral issues. We have had to cancel OT the last couple weeks due to illnesses between Jen's family and ours, and I can feel us slipping away a little. So I am eager to start up again.

After the meeting, the assistant director offered to show us Clare's new classroom. Clare will be coming in for a visit day at the end of the month prior to starting school, but Shawn and I jumped at the chance to get a sneak peek. As luck would have it, Clare's new teacher was in the building. Although she didn't currently have a class since it was the afternoon, she walked us through her classroom. She explained the different areas of the room and the daily schedule. She was obviously already well-informed about Clare and asked us lots of questions. I instantly liked Clare's new teacher. (Warm fuzzy feelings - yea!) The teacher was genuinely interested in learning all she could about Clare, and we could tell she loved her job and the kids. We also discovered that Clare's classroom is directly across from the nurse's station (who will be on site whenever Clare is in school).

I have been dreading the day when Clare starts preschool. I am so glad we had the opportunity to meet Clare's teacher and see the classroom. I will still be a basket case come March 31, but many of my fears and worries have been relieved. I must say that coming into this process with so much trepidation and low expectations has worked out for the best! Nowhere to go but up!

A Little Bit of Fame

Nothing too grand, but I am briefly published in the April edition of Parenting magazine. And I mean briefly. Basically a blurb in their regular feature "Mom Exchange." This month's was about different ways families stay in touch with extended family and friends. So, of course, I talked about blogging. And I am quoted!

So if you have your April Parenting magazine handy, open up to Page 27!

All Dressed Up

In the Thick Of It

We are now in the thick of Clare's transition from Early Intervention to preschool. Last week, we had Clare's eligibility meeting. Basically, Shawn and I (accompanied by Clare and Simon - lucky Jamie had a playdate) sat at a table with Clare's current OT and PT from Easter Seals, and the team from the school department - the assistant coordinator, school nurse, speech therapist, and special educator. After the coordinator explained they were coding Clare as "other health impaired," the eight of us signed a piece of paper and circled the word "yes" stating we believed that Clare was "other health impaired" and qualified for the developmental preschool. Then we signed more papers agreeing with that decision, then signed more papers stating we agreed with the papers we just signed agreeing with the decision. Love all the paperwork!

So now Clare is officially eligible for preschool. The next thing we discussed was equipment that Clare would need for preschool. This way, if anything needs to be ordered, they will have it in time for Clare's first day. The first thing the school nurse brought up was a defibrillator. I admit that surprised me. Having an AED in Clare's school is something that Shawn and I have discussed and both agree we are going to push for. But I did not expect one of the team members would mention it first. I was equally surprised to find out that the none of the preschools have an AED. The nurse explained it was not mandatory unless the school had an organized sports team. (What - no preschool volleyball or field hockey??) I am pretty sure Clare is not the first child to go to one of these schools with a heart condition, so I have a hard time believing she is the first child to require an AED. I could not get a feel whether the AED requirement is going to be a battle or not. The other pieces of equipment discussed were things like a chair with sides, a toilet seat with handles, no stairs in her everyday environment, that kind of stuff.

Our next step is the IEP meeting this week. We have our childcare all lined up for all three children so that Shawn and I can concentrate on writing the IEP with no distractions. Unfortunately, Jamie is getting over the flu, Clare currently has the flu and sleeping soundly in the middle of the day as I type, and we are praying that neither Simon nor us come down with the flu. I have a feeling, though, that I will not be participating in the IEP meeting.

Snow Bunnies

It's been quite a winter here in New Hampshire. I laugh at some of my posts from last winter and the photo of Jamie standing next to the tiniest snowman ever built. Not the case this year. It's been the snowiest winter in NH history. Which was so nice and lovely in December, kind of nice in January, not so much in February, and we're officially DONE WITH WINTER now that it's March. However, we were just dumped with more inches of snow last weekend, and the snowblower died a quick death right in the middle of our half-cleared driveway on Saturday. Shawn went snowblower shopping that afternoon and unfortunately, since it's March and thus we're into summer gear already, the pickings were slim. We may be shoveling ourselves out the rest of the winter.

It's been the kind of winter where our swingset has half-disappeared, our deck is barely visible, and there literally is nowhere to put anymore snow from our driveway. We have two piles of snow on either end of the driveway that are easily seven feet tall. It's a blind backout every morning, praying I don't hit a neighbor's car. With all this snow, though, the kids have not had a lot of time playing outside. Neither Simon nor Clare can walk in the snow, and they rarely nap at the same time. I am not up to the task of carrying two children around in the snow, so Jamie is either stuck staying inside with us or playing outside by himself.

Today, however, was a "warmer" day (I love how 40 degrees seems positively balmy after temperatures below freezing). I convinced Shawn to cut out of work for a little bit this afternoon, and we bundled the kids up to head outside. Clare has not had much practice walking outside because of the winter conditions, but I thought we would give it a whirl since Shawn was here to help out with Simon and Jamie. I figured we would last about five minutes. Jamie bounded over the huge hill of snow like a rabbit and was off into the backyard. Simon sat in the stroller and laughed at Jamie's antics. Clare shuffled around on the sidewalk experimenting with the sensation of walking on uneven ground while wearing snowpants and snowboats (a first for wearing both those items). Her confidence soon increased and, before I knew it, she had taken off down our driveway. Our snowy, ice-crusted, uneven, downward sloping driveway. Not a trip, stumble, or fall!

Clare loved playing in the snow. She picked up snowballs (the bigger the better), chunks of ice, and the dirty yucky plowed snow. While Jamie and Shawn had a huge snowball fight and I pushed Simon around, Clare stomped in the puddles and touched all the snow she could get her hands on. We had a fun afternoon walk in the snow. Now it can all melt.

Valentine Fund Thank You

Thank you to those who donated to the Williams Syndrome Association Valentine Fund in honor of Clare. We received our list today of who sent in donations in Clare's honor, so we know who you are! A big thank you to all!

It is not too late to donate, if you are interested. Simply click on the link to the right to be directed to Clare's page.

Reeling

I don't even know where to begin sometimes. There is so much in my head threatening to spill out and I try to marshal it, corral it, and rein it all in, but often it is too much.

The death of Blake has naturally hit our little community hard. The WS-mommy bloggers (as I refer to us) have been together for some time now. I think I was the first to start three years ago, but our numbers have exploded over the past couple years. There are so many of us now I cannot keep up with everyone (thus why I only have a select few linked on my blog). It's amazing to have this close group of friends, the majority of whom I have never even met in person. We have been there for each other through it all - the highs and lows, the triumphs and challenges. We have counseled, supported, and loved each other on the phone, via e-mail, through our blog posts and comments. We have been there through those tough days, nail-biting tests and evaluations, multiple echos, caths, procedures, and surgeries. But this is the first time we have experienced death in our community. That one of our precious children is gone. And, at least to me personally, it has sent me reeling.

My heart just aches for Whitney, Troy, Brandon, and their family. I cannot begin to fathom what they are going through. I pray I never have to find out. Yet I know this has been another dose of reality of how fragile many of our children are. Last night, as I said my final good-nights to Jamie and Clare, I leaned into Clare's bottom bunk. She was sitting there in her blue airplane hand-me-down boy pajamas, her crazy curls standing on end, and wearing dress-up earrings, a bracelet, and a ring (which she must have smuggled in her bed sometime during her afternoon nap). She looked so beautiful, so sweet, so tiny. I gave her a big squeeze and whispered, "Mommy loves you so much." She touched my face and whispered back, "I love you." That's what keeps me going.

In Memory

Baby Blake

July 6, 2007 - February 26, 2008

Your time in this world was not long, but what an impact you made on us all. You are loved. We are praying for you and your family.

Blurb

In our own little neck of the woods, Simon is back on his feet. His lungs, ears, and eyes were clear at the doctor's yesterday, and his oxygen levels were back up to 99. Jamie and Clare only got a touch of the sniffles, as did Shawn and I.

In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.

Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.

Reality Check

As I mope and complain about how tough things have been around here lately with illnesses, I have to stop and think about those who would give anything to just be at home with their kids right now. As I write this, I am thinking about Baby Blake and Ava - two kiddos with Williams syndrome who are currently in the hospital and have been for some time. Ava is very sick, Blake is fighting for his life, and it hits me hard with a dose of reality. It reminds me that I need to take a step back and count my blessings, not my woes. To hug, love, and kiss my kids even when I am fatigued, and thank God that we are (relatively) healthy. That Simon is slowly getting better and did not end up in the hospital. That Clare has gone five months without needing a cath. That Jamie is running around, playing, and being his normal bundle of energy. I say a special prayer tonight for those two children and offer my challenges, frustrations, and worries of the day as a sacrifice to them.

When It Rains

... it not just pours, it's a monsoon.

After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.

First Haircut

I need a haircut! I can't go around and let the girls see me like this. What is that thing sticking up in the back? I look like such a baby with this hair.

Hey, this is fun! Wow! A big boy haircut. At the same place and with the same woman that Daddy and Jamie go to. I am one of the guys now. Woo hoo!

Actually, you know what? I really am all done with it. This is no longer fun. No, I mean it, quit holding my face, pulling my hair, spraying water on my head. Just stop it. NOW!

The finished product - a handsome 9-month old with a big boy haircut. (Or as Daddy likes to call them - My First Mugshots.)

Little Princess

Busy Week

It's been a busy week in our household. Clare has had some sort of thing going on every day, we've had some wicked weather, and poor Simon is still sick.

Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!

My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)

Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.

Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.

One day and counting until the weekend!

Valentine Fund

Valentine's Day is naturally a day that is connected with hearts. While we are thinking about hearts, we always think about the heart that needs our help and support the most - Clare's heart.

"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.

With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!

The Picture of Health

Simon is an oddity in our house. He has never been to the pediatrician's office for anything other than his well-baby visits. Unbelievable! I get questioned about how much he weighs, and I proudly declare, "I don't know!" He rarely gets weighed! He takes no medication, has no diagnoses, and is the picture of health.

So when some little bumps appeared on Simon's skin recently, I chalked it up to a mild reaction to recently introducing dairy in his diet. We cut out the yogurt, but the bumps did not go away. Then I realized that it was eczema, something that Jamie battled in his infancy as well. It was not until the rash spread over his entire body that I thought something more might be going on. Simon is child #3 and we have seen many illnesses come through our house, so I figured that Simon had a little virus that ended in a rash, which is common. Then his eyes started to goop, and the rash on his cheeks became quite painful-looking. So I finally decided to call the pediatrician and have them take a look at Simon.

And don't you know it, it's not just a rash. In fact, Simon has Hand, Foot, and Mouth Disease (complete with blisters in his mouth and throat as well as the full-body rash), an eye infection, a skin infection around his eye from the resulting drainage from his eye, impetigo on his face, and fluid in his left ear (which is not an ear infection yet, so hopefully that will go away on its own). Each of those individually is really not a big deal and we have had each one in our house at some time. But not all at once. To the same kid. So now Simon is on a bunch of medications, including one to fight staph infection (not that he necessarily has one, but impetigo can be caused by staph, so the pediatrician wants to make sure it gets treated ASAP).

Through it all, Simon remains my sweet, happy baby. He is having trouble sleeping at night, but the doctor said his mouth blisters could be more painful at night and a dose of ibuprofen before bed would help him sleep better. In fact, he was grinning away the entire time the pediatrician was examining him. Hopefully in about a week, he will be the picture of health once more.

Potty Talk

Potty-training... going fabulously! I was super nervous about even training Clare because she is... (whisper) a special needs child. With Jamie, we did the whole "sit-on-the-potty-get-an-M&M" routine for a couple months when he was about 2 years old with small success. Then Clare was born, life got crazy, we moved, and potty-training took a backseat. Or as I like to call it, we took a more laidback "when-he's-ready-to-train-he-will" approach. And Jamie did. Woke up one morning shortly after his third birthday, wanted to buy Spiderman underwear (which we promptly did), and was trained in two days. It was almost too easy. So I've been having internal freak-outs about training Clare.

One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.

Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.

Happy Birthday, Jamie!

Dear Jamie,

Five years ago today I had no idea how my life would change. I knew that life would change - after all, I had recently quit my job, weighed 40 pounds more than normal, and could feel a little person doing somersaults in my belly. I just did not know in what form those changes would be. Motherhood has been beyond my wildest expectations. No one can prepare you for how incredibly hard and how incredibly amazing it all is.

I read all the parenting books, but no one told me how I would erupt in fits of giggles watching you dance or listening to your knock knock jokes. I watched friends play with their babies, but no one clued me in that I would willingly brandish a sword and refer to myself as "Donatello" or "Splinter" as we marched around the house. No one warned me that I would love you so much that it would make my stomach feel funny and my chest tight and even fill my eyes with tears. Or that I would start welling up over the Johnson & Johnson baby commercials when, before having you in my life, the only movie that ever made me cry was Dances With Wolves.

As you grow, I know that each day is a gift for what it brings. I realize that, even though you are no longer my baby, I still love to watch you sleep at night (but not in the scary way, like in the book Just In Case You Ever Wonder). I love to hold you on my lap and read books together. I love how the majority of my photos of you are very sweet and slightly goofy. I love to watch you carefully hunt in your I Spy books, pose your ninja turtles just so, and arrange your stuffed animals before bedtime - all with the careful precision and attention to detail that you have inherited from me. It has been a wonder and a privilege to be your mother over these past five years.

We love you, Jamie! Happy Birthday!

Gotta Love It

Simon Joseph - Incredibly handsome at eight months old.

Awareness

Around the breakfast table this morning, Jamie was questioning us about the day's activities (it is very important for him to know the itinerary of each day). He asked, "Do I have school? Do we have swim class? Does Clare have physical therapy?" As I answered "no" to each question, I explained that today was the weekend and a day to play at home all day long. Then Jamie asked, "Does Clare have Williams syndrome today?" I was floored and taken aback by the unexpected question.

We have briefly explained to Jamie in the past that Clare has something called Williams syndrome. One time, he overheard us discussing it and asked what that was. But I have no idea how much sinks in. Jamie is a very intelligent almost 5-year old, but you never know what they really pay attention to. So I explained to him that Clare will always have Williams syndrome. I told him that was the name for why Clare has her heart boo-boos, took a long time learning how to walk, has help from Jen and Kelly (her therapists) to teach her how to do things. Jamie grasped this simple explanation and added, "And why Clare doesn't like to eat anything!"

It was an eye-opener to hear Jamie ask about Williams syndrome. I know that he will know all about it someday. It will always be as much a part of his life as it with Clare's and our entire family's. I was just surprised it would happen so soon.

Endocrinology Fun

No, those two words really don't go together. But Clare did have her regular 3-month endocrinology appointment today. Usually the appointments are fairly routine - Has she missed any doses? Nope. Do you see any symptoms? Nope. Let's check her levels and see you back in three months. Great.

Today, however, was one of the best endocrinology appointments of all time. (Might be a stretch, but not really, if you've ever endured an endocrinology appointment.) First, Clare's blood pressure was 104/58. I don't think I have ever seen it that low! She sat so still while the nurse took her blood pressure. Then like the good little heart patient she is, she offered her second arm for another measurement (many times, Clare has to have her pressures checked in all four extremities). It was her lucky day that the nurse only needed one blood pressure measurement. A big relief that Clare's increase in her medication dose did the trick in bringing her blood pressure back down. With this news, when we see her cardiologist in March, I am fairly confident we will not be sent to have an MRI done of Clare's renal arteries.

Second big news was how much Clare has grown! She now measures 34.5 inches and weighs 23 pounds, 4 ounces. That's an increase of over 2 pounds and an inch. She has actually made it onto the growth chart for height (at the tenth percentile) and has more of a curve in weight (she will probably never be on the chart for weight, but a curve is better than a flatline).

Our third big news is that Clare's endo is trialing her off her thyroid medication. By age three, the crucial brain development stage when the thyroid is ultra-important has passed. The thyroid is still very important, but it's a safe time to see how Clare does without taking Synthroid, the synthetic thyroid hormone. In the long run, coming off her medication for six weeks won't harm her. Clare's dose has never increased since she was diagnosed with hypothyroidism at six weeks old. So her body is producing some of its own thyroid hormone, and her endo feels she is a good candidate to trial off the medication. He will test Clare's thyroid levels in six weeks and see how her body does on its own. I am excited to trial her off the medication (one less med would be great!), but I am also not holding my breath since Jamie was also trialed off at the age of three and his levels plummeted. He is now on Synthroid for life. Clare's endo is also going to check her calcium levels in six weeks. If they are in the solid normal range (as they have been for the last year), then he states the chances of Clare developing hypercalcemia are slim and she is in the clear. We will do a couple rounds of blood work on her thyroid levels and see the endocrinologist again at the end of April.

So now the fun.... enjoy our crazy, adorable, sweet, lovable children!

Evals Here, Eval There, Evals EVERYWHERE!

Clare had her six-month evaluation with Easter Seals today. Her OT, PT, and a speech therapist (along with a student shadowing our PT) came to our house and spent the afternoon with us. I had the joy of 1) observing Clare's evaluation while pretending to not observe so Clare would not be distracted while 2) making sure Jamie stayed out of everyone's way while at the same time making him feel involved and useful and not missing out on the fun while 3) entertaining, breastfeeding, rocking, swinging, bouncing Simon while 4) answering loads of questions about Clare's current activities while lastly 5) overseeing the furniture repairman who was repairing a gouge in our new bunk bed set. It was a challenging afternoon for all involved!

Clare continues to lag behind when it comes to gross motor skills. She is currently at a 12-14 month level, which is up from her pre-walking 10-month level at her June evaluation, but still very low. I know Clare’s hurdles are that she does not climb. She cannot run or jump, has trouble on uneven surfaces, does not do stairs, and cannot even manage stepping up and down on curbs. She even panics when faced with a low threshold that she has never encountered. She has the three floors of our house down pat, but wants to hold hands when at someone else’s house and needs to step from a carpet to wood floor (which has an almost nonexistent difference in height). We are working on the stairs and encouraging her to step up and down alone, but she prefers to be carried.

All evaluators noted Clare's difficulty with visual perception and focus. We will be exploring in the near future having her seen by the special developmental opthamologist and researching vision therapy. There are pages I could write about everything they noted in that area. Bottom line is that Clare is having trouble, and we are going to try to fix it!!

Clare’s speech and fine motor skills are more at a 24-month level. Her vocabulary has exploded, and she chats all the time (about 50% is understandable). The cats and baby dolls get lots of scoldings these days (apparently there is a lot of biting going on in the house because I hear many “no bites” and see frequent finger-shakings at animals and dolls – I do feel bad for them because the time-out spot of choice is in the play kitchen oven). Clare has started telling knock knock jokes. Okay, she has a repertoire of one, but I am pretty impressed with it, especially since she came up with it all by herself:
Clare: Knock knock
Who’s there?
Clare: Midnight
Midnight who?
Clare: Meow
The speech therapist noted that although Clare can manage almost all the consonant sounds, she has a lot of soft sounds (such as soft “b” and “p”). She foresees that Clare will definitely have speech therapy added to her schedule once she starts school.

On the positive side, Clare is at age-appropriate levels in her receptive language skills and self-help skills. We were very pleased to hear this (even though we knew she was doing well in those areas). Following Dr. Mervis’ advice in not coddling Clare, we are encouraging her to be more independent and do things for herself. She sleeps in a bottom bunk bed now, helps with dressing and undressing, brushes her teeth, washes in the bathtub, and has recently started potty-training (very recent, many M&M bribes, and Elmo is learning, too). Clare is slightly afraid of our small potty, so we are taking it slow. But it is gratifying to hear that our hard work is paying off in that Clare is where she should be in that area. These are the skills that Dr. Mervis said will make a difference in Clare’s adult life. We are even experimenting with no more coddling when it comes to food. Clare is served what the rest of the family eats and we go from there. I have seen her eat things I thought she would not be able to eat, and now we are wondering how much of Clare’s eating frustrations are due to her oral motor skills and how much are due to her wanting her own way.

The next step is for the school district to review Clare’s evaluation and set up their own. We were told they will most likely want at least an evaluation by an educator, since there was no educator present at today’s evaluation. Whether the school department wants OT, PT, and speech evals is up in the air. We should be notified about 6 weeks before Clare’s third birthday when her evaluation with the school’s team will be. Then there will be classroom placement, IEP writing, and more. We are at 10 weeks and counting until Clare starts preschool. A date that seemed so far in the future is now looming closer and closer.

Old Man Winter

We have already been hit hard this winter with snow, snow, and more snow. (Snowiest December on record for over 100 years and still coming.) I love it. I don't mind the freezing cold mornings, bundling kids in layers upon layers, navigating our badly-plowed road (it may be a different story come March, though!!). Jamie loves the snow. He treks out every chance he can get. Unfortunately, it is not as often as he would like since neither Clare nor Simon want to be out in the snow. But we have gotten a few good days of snow play. I even got the chance to snow blow all by myself during one huge storm while Shawn was gone for a couple days! (I am not usually allowed to touch the toys... I mean tools.)

We are settling into our winter, post-Christmas life. Clare has (and had) a round of doctor's appointments and evaluations coming up - orthopedic, neurology, feeding team, Early Intervention evaluation, preschool evaluation, lung scan, and, of course, the ever-present cardiology and echo (but we're still a few weeks away from that one). More updates as we check the list off one by one!

Clare had her "annual" eye doctor appointment before Christmas. It it is supposed to be annual, but the trauma of experiencing her first appointment when she was just a few months old was enough for me to keep pushing it back and pushing it back. (Trauma for both mommy and Clare - as in inserting a speculum to keep Clare's eyes open.) Finally, after being questioned by almost every doctor and her therapists whether Clare had her eyes checked recently, I realized that I could not hide any longer. I am pleased to say that 1) no speculum required this time and 2) no problems with Clare's visual acuity, no drift, no strabismus, nothing requiring glasses. (Although many of Clare's WS-buddies wear glasses and are adorable, I have to think it is also a pain in the butt. I have enough pains in that area.) However, both Clare's OT and PT noted that Clare has problems with visual perception. We are discussing the option of having her evaluated by an opthamologist who specializes in this and looking into vision therapy. Also, since Clare does have some vestibular issues and trouble having her eyes follow and focus on objects without moving her head, we may try an astronaut spinning program with her as well. There is a whole bunch of technical mumbo jumbo to go along with this, but I am running on empty today, so I am not going into it all. Let's just say that the fun never ends around here!

While we may be adding doctors and specialists to our busy life, we are also trying to knock them off one-by-one. Clare was officially discharged from her neurologist last month. He does not see any neurological issues coming into play with Clare at this time. So now he has seen her, knows her, tracked her baseline, and if anything comes up in the future, we can take it from there. We had Clare's orthopedic appointment as well. It is also official that there will be no more AFO's (which is good since they have been sitting in the living room closet untouched for about four months now!). Clare does roll in on her ankles when walking; other than that, she is very steady on her own and does not need any special shoes, supports, or braces. Clare is doing great walking indoors. Outside is still very iffy. I have not really pushed her on the outside portion with winter. Ice, snow, slush, puddles - just not fun learning conditions! Come spring and summer, we're going to concentrate on Clare becoming more comfortable walking outside. The orthopedist did take a look at Clare's left foot because of her toes and stated she does indeed have a clawed toe. (Her toe right next to the big toe curls down and the big toe and third toe lap right over it.) Her first joint is very stiff there and her toe muscle seems weak. Right now, it is not impeding her walking and is not causing any pain or discomfort (or at least Clare does not complain about it). It will have to be surgically-fixed in the future if it becomes a problem, but for now, the doctor is going to keep an eye on it. Clare does not need to return to orthopedics for a year.

As much as I love the Christmas season, I do look forward to getting back into our routine. Back to preschool drop-offs and pick-ups, swim classes (of which Simon has joined the ranks), and all the appointments. Plus we're gearing up for the Ninja Turtle birthday party some nameless-almost five-year old is having in a few weeks!