Tuesday, September 26, 2006

Murphy's Law.... Or Something Like That

Clare had an awesome therapy session this morning. Of course, we have just been approved for additional services, so Clare will have to prove us wrong! We are meeting Clare's new PT in a couple weeks (she is the same PT who evaluated Clare this summer, so I know that Clare and we like her, which is a must), and next week, Clare is going to have her first session in the sensory room.

Today Clare worked for over an hour - almost nonstop. One brief crying break when Clare got scared she was going to fall over. Clare worked on the ball, did weight bearing on her arms, all kinds of fancy things that she usually resists doing. And the words she repeated! Absolutely clear, here's the list from today alone - apple, pretty, oh no kitty, mouth, moo, neigh, my. This afternoon, she wanted a drink from my water bottle, so I said to her, "Clare, water?" She looked at me and said, "Water." I almost fell over. I ask Clare where her nose and eyes are and she will point to them. Her favorite is to show you where her teeth are. So I have to brag about her accomplishments today. Clare constantly amazes me with how fast she can learn.

Monday, September 25, 2006

Trying New Things

I have been complaining that Clare has stalled when it comes to her gross motor skills. She loves to sit and roll, but forget crawling, pulling up, walking, or even getting from a laying down position to a sitting position.

At Clare's OT session last week, I discussed our concerns with Jessica. She agreed with me. Clare is doing amazing with her speech and fine motor skills. The big thing (in relation to fine motor skills) Jessica was concerned about at Clare's evaluation in June was that Clare wasn't releasing objects. Now Clare takes objects in and out of buckets, boxes, that kind of thing. She will hand you a toy if you ask her for it. Clare is learning her animal sounds and will respond with "moos" and "neighs" when you ask her what the cow and horse say. She even has her own version of "quack." She now says "uh oh" and "kitty" very clearly. And she occasionally says "mama" (yea!). Clare is turning into a regular piggy at mealtimes. The other night, she ate so much pizza, that she was up for five hours past bedtime with indigestion. Obviously we weren't happy about the indigestion, but we're working on that! So I am getting frustrated with Clare's lack of progress when it comes to her gross motor skills.

We are going to increase Clare's therapy. It is not my ideal choice (as in I wish Clare would start walking on her own!), but I think it's best for Clare, since she has stalled and needs something to rev her back up. Also, her one hour of OT a week is usually more like 30-45 minutes a week. Clare just can't make the full hour sometimes. And she knows when Jessica wants her to work. Clare would rather snuggle! So if we can add another session in, then even if Clare only lasts half a session, she will actually get a solid hour of therapy. The plan is still a little hazy, but she has been approved (through Easter Seals) for a PT consult, and most likely adding an hour of PT every other week. Jessica also wants to introduce Clare to the sensory room at Easter Seals, where she can play in the ball pit or on the swings. It will help Clare with some of her vestibular activities, plus it will vary her therapy. That may be a separate hour or it may be that one hour of OT a month will take place in the sensory room. Whichever way Clare's therapy goes, I hope we see some results.

Monday, September 18, 2006

What's New?

We're in doctor's visits limbo right now. Both a wonderful and a frustrating place to be. Clare sees her pediatrician at the beginning of October for her 18-month check-up, then the endocrinologist, then the GI, then her cardiology appointment and sedated echo (which will either be in October or November). It's been so long since Clare has seen a doctor (not counting when she was sick about a month ago), that I feel disconnected. If you've done the frequent doctor tour, you know what I mean. Clare used to have doctor's appointments every week. Sometimes she had up to four in one week. We used to be frequent fliers. I most definitely am not complaining - it's just weird. And what may seem even weirder is that I am looking forward to her upcoming appointments. We get to check in and see if all systems are still go. It's great to have such a span between appointments now, but it's also a relief just to touch base and see how Clare is doing from a medical perspective. This may all sound crazy, unless you've been there.

Clare is still in weekly OT (she will be in it until she is three years old, at which time, she will start going to the developmental preschool in our city). She is doing a great job with standing, but cannot pull herself up. If I stand her up at the coffee table or couch, she can hold on for long periods of time. She loves to do this, especially when Jamie and I are playing a game at the table. It makes her feel like she's part of the fun. However, her upper body strength is still weak, so her therapist is working on building that up and teaching Clare to pull herself up. I think we've all given up on crawling and are aiming for cruising now. I don't want to put any pressure on Clare, but she is going to be the flower girl for my sister Christina's wedding next June, so we're hoping she is taking some steps by then!

Blogger is being finicky, so a couple more beach photos to follow!

Friday, September 15, 2006

And Then There Were Three

This blog is primarily about Clare, so I will let her tell you the news - She is going to be a big sister!

Yes, Baby Number Three (now known as Jelly Bean in our house) is on the way and should be here in early May. Between nausea, extreme tiredness, and migraines, I am feeling great!

When we found out we were pregnant a couple weeks ago, I wanted to wait to tell people. Although we are thrilled to be expecting, it's funny to see the reactions of people when you tell them you are pregnant. Again. "Oh, that's... great. You have a boy and a girl already, don't you?" (Because obviously that's the magic formula, and once you have that, why have more?) "Congratulations. This is what you guys want, right?" (Translated - was this an oops since you already have the perfect family?) Well, it's not an oops, and we don't have the magic formula in our family. After Clare was born, I got many, many comments along the lines of, "You have a boy and a girl! That's perfect. Now you can stop." And my response was always, "We can't stop. They each need a brother and sister. Now that would be perfect." Another favorite after Clare was born was (especially from those who knew we wanted more children), "Well, you're certainly going to rethink having more kids after everything you've gone through with Clare." Shawn and I did rethink our original dream of having four (or more) kids. Or, more accurately, we discussed whether or not we still wanted that in our lives. Heck, after having Jamie (which we thought was so tough), I wondered sometimes if we were crazy when we wanted to have more children. Our first year with Clare was stressful, intense, challenging. But that's not the end of the story. And, even if it was, Clare has brought us so much joy, why wouldn't we want to add to that?

Why do people feel free to make comments and judgments about other people's lives? And to their face sometimes? I have many, many friends who have only one or two children. That's what they want, they're extremely happy, and that's great. Sure, that's the typical societal expectations of a family. But in my close group friends, most of us are on baby #3 or #4 or (GASP) #5. Why are large families often viewed as being irresponsible, can't control themselves (i.e. you should be using birth control), not caring or thinking of the well-being of their children (how can you possibly afford to send all those kids to college? or Disney World? or their spring break in Cancun?) I certainly am not accusing everyone of doing this, but there are those out there. Even if you don't intend to be critical or nasty or judgmental, we all have those rash thoughts come across our minds at times (and sometimes out of our mouths).

As for telling people right away, Shawn won. I wanted to wait until I was past my first trimester, especially since I have had a miscarriage in the past and that fear never leaves you. But Shawn reminded me that why wouldn't I want all these people to share our joy and excitement and, if God willing, our suffering and pain? I pray fervently that it doesn't come to that, and am trying to think positive, positive thoughts! Besides, it was fun to share the news again!

So I apologize that this post may be a bit on the terse side. Hey, what can I say? I'm pregnant.

Monday, September 11, 2006


September 11, 2001

This is the Kennedy assassination to our generation in that I will always remember where I was and what I was doing that morning. I had just settled in at my desk at the insurance company I worked for as a property and injury adjuster. Normally, I was out on the road all day, but for some reason, I was in the office that morning. Shawn called me (he worked seven floors up in the same building) and asked if I had heard the news. Once he told me, I checked it out on my laptop, but there were still lots of confusion about what was going on. I also talked to my mom, who is usually up-to-date on all the news, but she didn’t know anything more. I remember seeing the cameras catch the footage of the second plane hitting the Towers and disbelieving what I saw. This was news footage you see somewhere else in the world, not the United States. For the next hour or so, I talked to Shawn often on the phone. He had talked to his mom who had reported riots in Portland (near where they lived). We heard that the planes had departed from Logan Airport, which is only 45 minutes away from us. We both ended up skipping out of work (perks of being “on the road” employees) and continuing our vigil in front of the TV in our basement at home. I remember being scared and confused, but glad that Shawn and I were together.

As tragic as this day was to our nation, September 11, 2001 has personal meaning to us as well. This was our due date for our first pregnancy. That pregnancy had ended in a miscarriage six months before, but you don’t forget your due date. It hit me that day that if the baby had lived, I would be either in the hospital giving birth, had just given birth, or giving birth any day. I can’t imagine how much more scared I would have been bringing a child into the world amidst all the terror and chaos of that day. Although I grieve that loss of life, I admit that on September 11, 2001, I was glad for the first time since my miscarriage that I was not pregnant. Today, however, I mourn the loss of my child again, who would have been five years old this month. We love you and we think of you often.

Saturday, September 09, 2006

Vacation Blues

Our beach vacation is over. It is always sad to have it end, but comforting to come back home.

As we set out on this vacation, I had a lot of expectations. We went to Ogunquit Beach last year and had a fabulous time. Jamie loved everything about the beach, and Clare was a happy baby in her little playpen and in the Baby Bjorn. I had all these rosy pictures of sun-filled, sand-filled days.

Unfortunately, things didn't go quite as planned. We began our journey in the aftereffects of Hurricane Ernesto and an equally ferocious migraine for me. Once we got to the beach, it was raining too hard to do anything, but take shelter at a restaurant for lunch, then huddle in our hotel room. Jamie and Shawn braved a walk along the beach so Clare and I could nap, but the first day was pretty much a bust. I admit that I was very upset and disappointed that evening as we went out into the pouring rain again to get some pizza for dinner. This wasn't the perfect vacation. Where was the sunshine? Where were my two happy kids? (And, for that matter, where was their smiling mommy?) In its place, we were handed a soggy day, a grumpy, headache-ridden mommy, and two whiney, hard-to-please kiddos. Luckily, Shawn is there for when the bad moments come. After the kids went down that night, we sat on the balcony and talked about why we were disappointed. Instead of just whining and complaining ourselves, we decided to make the best of whatever got handed to us on this vacation. After all, we were together as a family in a gorgeous place. There was no laundry, no cooking, no telephone, no computer, none of the distractions of our everyday life. The next morning dawned (quite early to us, thanks to Clare, who was up before the sun). When the sun began to rise, I caught glimpses of color in the sky - yellows, blues, and pinks that promised a beautiful day. And it was. It was cooler than I would have hoped and we still had two whiney kids at times (and I admit, an occasional grumpy mommy), but once I changed my expectations of what this vacation was about, things started looking up.

Upon coming home, I thought a lot about my expectations of things. That is what made me so blue on this vacation - it just didn't live up to my expectations. I thought this year would be a mirror of last year. And it wasn't. Which isn't a bad thing because our vacation was wonderful in its own way. We really did have a great time. The cooler weather forced us to do things other than just sit on our bums at the beach. We went on a real Maine lobster boat and watched a real Maine lobsterman pull his traps. Jamie kicked our butts at mini-golf (courtesy of Shawn's bunny ears). Jamie and Shawn rode an elephant (yup, you read that right). We went crab-hunting, starfish-hunting, sand dollar-hunting, and seashell-hunting. We watched them make taffy at a candy store, then let Jamie have carte blanche in choosing what he wanted. Clare got the biggest lollipop she had ever seen. We saw the turbulent ocean during a torrential downpour (from the warmth of an enclosed restaurant patio). At low tide, we explored the area around our hotel and found the greatest swimming holes for Jamie and Clare - pools of water that are left on the sand after high tide, which the sun warms up all day. I could never have imagined all these different things we were able to do. If our vacation had turned out the way I expected, we would have missed so much. It's an important lesson to learn, especially concerning Clare (see, you knew I would get back to her somehow!). I have to let go of so many of my expectations of how I think her life should be. Expectations are not necessarily bad. I also don't think I am shortchanging her by not having those same expectations. But I can't let myself get upset or angered or blue when things don't go as I expected. Or, quite frankly, I would be living my life in misery! Very little in Clare's life has gone as I would have expected.

In retrospect, I think part of the magic of last year's vacation was due to the fact that it was a hard summer for us. At the end of the summer, we were still reeling from the shock of Clare's diagnoses, had recently endured her first cath, and had just received another shock that Clare was not doing so well and needed her second cath sooner than expected. That cath was days after our beach vacation. So our trip was a haven for us. A little slice away from reality. My positive spin on this whole thing is that, in some ways, it was good that our vacation wasn't all I dreamed it would be. It means our life is pretty darn good right now! We have our good days and our bad days, but our life is not the emotional roller coaster it was last year. And I am thankful for that.

Friday, September 01, 2006

Clare's Love Affair

For better or for worse, Clare has discovered television. I am not anti-television by any means, but I am pretty firm that my 3-year old only watches 30-60 minutes a day. We don't get cable, so Jamie only watches videos, which is a great way to have control over what he watches (especially when he gets older). While I shower, Clare usually plays in her walker upstairs while Jamie watches his show. But now, Clare has her own shows, too. #1 on the list is Blue's Clues. (So much better than Barney!) Clare loves Blue's Clues. She chit chats to the TV and is quite enthralled with the show. Jamie is playing at a friend's house today so I can get some beach packing done. Clare is very mommy-clingy these days, but Blue is an acceptable substitute for 20 minutes of productivity.

I cannot believe it is September already. Where has the summer gone? The summer is not quite over for us yet. We leave on Sunday for the beach. I cannot wait. We have not had a family vacation since we went to the beach last September. And, although we had an awesome time at the beach last year, there was this cloud hanging over us that Clare's second cath was going to be a few days after we returned. Thankfully we had no clue how bad Clare's cath was going to be (that's when she had her pulmonary stents placed and we had our first experience with seeing our child in the ICU on a ventilator). Also, last year, Clare spent the majority of her sunbathing in a covered playpen (being only 5 months old). At night, she did ride in the Baby Bjorn when we took our evening walk on the beach, but the daytime was too hot and sunny for her. So I am looking forward to seeing how much Clare enjoys the beach this year. She loves playing in the sandbox at home, so I hope beach sand is just as fun! I'll have lots of photos to share when we get back.

I really should get off the computer and actually get something done before Clare realizes that Blue actually is not an acceptable substitute for dear mommy!

P.S. As I was downloading photos later today, I found this one - proof of Clare's other new love affair, this time with beef teriyaki. We had take-out Chinese the other night, and Clare was "eee eee"ing at Shawn to try his beef teriyaki. He let her have a taste and that was it - she wanted the whole stick to herself. She gnawed on that for the rest of dinner! When I pulled out the leftover beef teriyaki the next day for lunch, Clare remembered her new passion. "EEE EEE!" more insistently this time until I, too, relinquished my beef teriyaki.