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.