Crazy House

We live in a crazy house. I am sure all mothers of young children (and maybe all mothers?) say that! But we honestly live in a crazy house sometimes! Our craziness is increasingly crazy these days because we are selling our house (actually sold yesterday - whoo hooo!) and, thus, moving. Plus we're getting ready to go back to Boston next week for Clare's catheterization. Add to that Shawn being out of town for a couple days, and we were truly crazy today!

Today was a good crazy, though. We definitely have our bad crazy days (umm... yesterday with a very tired, whiney, grumpy, tantrum-prone 3-year old), but today was one of those days that get chalked up to being a good day. Nothing special happened. But both Jamie and Clare were in such good moods all day. We were silly and relaxed. Right before bed, I was getting Clare's room ready, so I put her in the crib to keep her safe while I did that. However, she really wasn't safe from the antics of her crazy brother. Jamie came in to inform me that he was "playing with Clare" and "sharing his animals with her." I told him that was wonderful and then thought I better go see what he meant. And this is what I found! Only Clare's face was visible under all the animals. But she was grinning away at her brother! I love the crazy. Sometimes it drives me crazy, but I wouldn't change it for the world!

Beautiful Children

My children are not only famous, but beautiful as well.

James Michael and Clare Therese

A Visit With the Feeding Specialist and Dietician

We met with the dietician and feeding specialist today. (Finally! After 8 weeks of waiting.) It was all good news! Hooray for Clare!

After an hour of talking, taking measurements (including a fun little pinchy device that measured Clare's fat storage under her arm and on her back - needless to say, she hated that!), and watching Clare eat, they concluded that Clare was right where she should be and doing great. She is not where a typical almost 11-month old would be, but we knew that. She doesn't do most things a typical 11-month old would. But her eating skills are on the same level as the rest of her development. And that's primarily what the feeding specialist looks at. If her other skills were more advanced (such as walking, talking, etc.) but she was not eating well, then there would be concern. But Clare's evenly across the board where she is in all areas. Clare has only been eating solids for less than three months now, so the feeding specialist said her progress was good so far.

After taking all her measurements, the dietician was also satisfied with where Clare was. She explained that although Clare is small and off the typical weight chart, she is not really as small as she seems or unhealthily small. Would they like her gain weight? Yes, she only weighs 15 lbs. at 11 months old. But Clare also has a small head (only in the 10th percentile), and head weight contributes a lot to an infant's overall weight. Plus, with Clare's low muscle tone, she is not going to have that muscle weight either that a typical baby would, and she never will. That is why the dietician measured Clare's fat stores, which were at the 50th percentile. That is exactly where they should be. Both specialists said to continue with what we're doing. There's no need to worry about supplementing Clare with any more than she's already getting. We are to naturally increase her quantities as she gets older, but we don't have to do any fancy stuff like add flaxseed oil or other fattening agents to Clare's food. They are both going to come back in a few months to follow-up with Clare.

And, as you can see in the photo, our little peanut is doing such a good job with her sitting. She can sit independently for long stretches now before falling over. And she doesn't fall like she's losing balance - she falls because she's tired and just lets herself go!

Shark Boy

S-It is amazing how much fun 1 dollar can buy you. This is Jamie and Jamie is excited by all things with teeth. But not just the normal kind of teeth that either you and I have, but the big sharp scary teeth. God love little boys and all the fun and adventure that come with them!

My Kids Are Famous

What a pleasant surprise to read another blog and see my kids on it! This is the link to my aunt Sara's blog, the creator of Clare's Angel (www.saragarska.com). We were excited to have Sara visit us from Texas a couple weeks ago. She met Clare for the first time and saw Jamie for the second time (she had not seen him since he was a baby). We had a wonderful visit, and the kids loved Sara.

To see my famous kids, go to Sincerely, Sara:
http://sincerelysara.blogspot.com

My Funny Valentine

Happy Valentine's Day!

Having said that, we're not big Valentine's Day people in our house. Shawn and I exchange cards and we bought books for Jamie and Clare, but, other than that, it's low key here. In our house, you don't need one special day to show your love for each other. We try to do that every day in little ways. And what's not to love about that adorable baby girl!

But I have to say that it was pretty sweet waking up this morning to find 32 Valentines hidden around the house from my crazy, romantic husband!

Our Little Patient

Clare is a little better today. She was so grumpy, clingy, and tired all day yesterday. Shawn took her to the pediatrician's yesterday afternoon (he is such a good husband - Jamie was napping, so he said he would take Clare so I could rest, too), and it turns out Clare also has an ear infection. She is on antibiotics for her ear infection. Her cough is less croupy, but still bad, and we had a rough night. But she is definitely feeling better today and is on the mend.

We heard from the hospital, and Clare's cath is scheduled for March 8. Other than being sick right now, she has been doing so well at home again. It's been a wonderful three months (since her surgery) to watch her grow and develop her skills. She sits more independently now, talks, eats better, and is more interactive. Clare is such a sweet, happy girl!

Nighttime Excursion

Clare and I were in the ER last night until 1 am because of croup. Clare has had a runny nose for a couple weeks now, but I figured it was a cold or teething and didn't worry too much about it. She's been fine otherwise. Then, last night, I could hear her coughing in her crib. If your child has ever had croup you know what that barking cough sounds like - it is very distinctive. Jamie had croup a number of times as a baby and toddler, so I knew the drill. Warm, steamy bathroom or cold night air. Soon, however, Clare's coughing worsened, woke her up, then she started crying. Before long, Clare developed stridor as well and was having trouble breathing, so we were off to the ER.

It's amazing how fast you get through the ER with a little baby having trouble breathing and the words "heart condition." No waiting at registration, no waiting at triage, no waiting in the waiting room. They brought Clare right in and hooked her up to oxygen. Her saturation levels were in the low 90's, but once she was on oxygen, they went right back up to 100. Her body temperature was very low, so they wrapped her in heated blankets. By this time, she had calmed down and was able to breathe a little easier. (And now she was wide awake - yea for me!) She was so adorable swaddled in a huge blanket, curiously watching all the ER activity. So many nurses stopped by just to peek at her. One nurse commented how little she was to already have a "zipper." I had no idea what she was talking about at first. Then I realized she was referring to Clare's surgical scar. I thought that was cute - a zipper!

Clare was diagnosed with croup and stridor (brought on by her seemingly harmless cold), which was no big surprise. She received a shot of steroids to help her breathe easier. The drug they gave her lasts for 18 hours, so it provided some relief to Clare today as well. This is the first time Clare has actually been sick. She was so cuddly and clingy (and grumpy!) all day today. Very sweet to have this little warm body attached to you at all times, but also very tiring, especially for the sleep-deprived parents. She still barks occasionally, but the steroids must be working because she sounds much better. Thankfully, she is not contagious, so we don't have to worry about Jamie getting it or be quarantined.

Welcome to the fun world of winter colds, Clare!

Dancing with my Star!

S~ The very first post I wrote on this blog, I wrote about how I was upset about the potential of missing things like walking Clare down the aisle or going to a Father/Daughter dance. Well, yes I will still miss that, but God has given me something better. When Clare gets really fussy, only two things can calm her down. One is nursing, the other is dancing to Rod Stewart (his new stuff, not the old) with Daddy in the livingroom. So it looks like I get my Father/Daughter dances after all. Thank God!

Baby Talk

Clare started "talking" today. After months of waiting, she is finally talking! Well, using consonants anyway.

Clare is a fairly quiet baby (especially compared with her somewhat loud-mouth 3-year old brother - okay, non-stop chatterer!). She does say "ooooh" and "aaaah," but that's about it. Then this morning, she woke up and decided today was the day to expand her repertoire. By the end of the day, Clare was also saying "na na na," "ga ga ga," and "da da da" (the latter one is only due to the fact that Shawn repeated it incessantly throughout the day because he is determined these will be Clare's first words). And she was talking almost all day long. She just didn't stop the baby babble!

For those of you unfamiliar with the delays of Williams Syndrome, the typical age for actually speaking words for kids with WS is 3 years old. So we expect Clare to be delayed in this area. We are starting to teach her sign language in the hope that we can help her communicate prior to being able to do so verbally. But we were so excited to hear her make some more progress! And she sounded so gosh darned cute with her new vocabulary!

Porky Pig.... Well, Almost

Clare had her weekly check-up at the GI today. She gained four ounces in 9 days (and three of those days she didn't eat because she was under the weather)! Whoooo hoooo! This is the kind of weight gain the GI wants to see. We were excited to hear this for two reasons - 1) It means we don't have to do any major intervention (such as a feeding tube) prior to her cath this month, and 2) Clare doesn't have to see the GI for a month now (as opposed to weekly). Hopefully she will continue this pattern of weight gain.

We're still waiting to hear from the hospital when her cath will be. We finally heard from the feeding specialist and nutritionist, and they are coming out to see Clare in three weeks. Clare continues to improve with her sitting - sitting for longer intervals and self-righting when she starts to sway off-balance.