Monday, January 30, 2006

Happy Birthday, Jamie!

S~ So, I know this blog is primarily to follow the story of Clare and keep everyone updated on her progress. However, today we are highlighting our other little trooper in our family, Jamie. It is hard to believe that he has turned three today. It has been the best three years of our life.

Yesterday, we had his birthday party and hired a face painter (hence the Ninja Turtle). I know I am probably very biased, but Jamie is such a wonderful kid. Sure he has his typical three year old moments (and sometimes we feel they are a little more than typical) but, all in all, he is such a great kid! So instead of me telling you why I think he is so great, I will relay a few short stories that tell me why he is so great.

The most recent story happened when he went and spent time with his Mimi and Papa. They took Jamie and his two cousins, Jasmine and Alex, to the Disney on Ice Show. As every good grandparent should do, Mimi and Papa (let the spoiling begin) said the kids could each pick out a souvenir. After the show, Mimi said she had a little more money so each kid could get one more souvenir. Instead of getting something for himself, Jamie wanted to get something for Clare. This story really gets to the heart of who Jamie is - a sweet sweet kid. I am also very proud of this little guy, because as much as Teresa and I thought we were doing a good job sheltering him from all the pain and stress of Clare, we realized we weren't capable of hiding everything. The day of Clare's open heart surgery, we called Jamie to check in on him and see how he was doing. After he talked to Mommy and then talked to Daddy, he asked to talk to Clare. I explained to him that Clare was with the doctor who was making her boo boo better. He insisted on talking to Clare, and as much as I tried, I could not persuade him otherwise. So I handed the phone to Teresa who spoke to Jamie in a high squeaky baby voice... and he was fine. I realized then that he understood in his own way, that something was wrong with Clare, and he needed reassurance she was all right.

So, that is Jamie, and I love him with all my might. Jamie, you are too young to read this but someday I hope you do. I love you. Your Mommy and I are so proud of the little boy you are and also, in many ways, the little man you are. You make us so proud of you each and every day. We thank you for being funny, and sweet, for being genuine and strong, for being a goofball and making us laugh when you know we need to. In this turmoil of a year, you have been a safe place for your Mom and me and, for that, we cannot shower you enough with Heffalump kisses. Happy Birthday, little guy, and I hope you had a wonderful day!

Tuesday, January 24, 2006

A Good Session

Clare had an awesome occupational therapy session this morning. I feel like we swing back and forth between her medical status and her developmental status. Right now, we're coming to another interventional point in her medical status, but developmentally, she is doing some great stuff. That's what keeps us going sometimes!

Clare is sitting independently more and more. She is starting to balance herself when she teeters and is even reaching for toys while sitting. We have been playing a rolling game with Clare. She knows how to roll, but rarely does it. So we roll her across the floor in one direction, then roll her back in the other direction. At first, she protested this "game," but now she will roll willingly when we start her since she knows what to expect. She is also becoming stronger when weight-bearing on her legs, and is bringing her hands to together to bang toys (next comes clapping!). Her therapist has noticed a decided head tilt over the last month which is getting worse. We have to keep exercising and strengthening her neck muscles, so she doesn't develop any tightness in one side. So far, she has not, so hopefully we can keep it that way. That's the great thing about therapy - we can catch these things before they develop into a full-blown issue.


P.S. For those of you tracking Clare's weight gain (ha ha ha), she gained 2 ounces in 10 days, so she's up to 14 lbs, 8 oz. That's still averaging only 1.5 ounces per week, so her GI was not impressed. We saw him yesterday before the echo. He said last week that as long as Clare does not have any procedures coming up, he's comfortable with seeing where things go with Clare's weight without any intervention. Hopefully her upcoming cath will not affect that decision. We see him again next week for another weight check, so I am sure we will discuss our options then.

Monday, January 23, 2006

Positive Thoughts

Positive thoughts... positive thoughts... that's what my wise husband keeps telling me.

Clare had her monthly sedated echo today. First off, the little stinker WOKE UP 20 MINUTES INTO IT!!! She was sedated with chloral hydrate, which should last about 90 minutes. Nope, in the beginning of her echo, she turns over, opens those big blue eyes, and looks at the radiologist with a big smile! Fortunately, the radiologist (who knows Clare very well) had already obtained a lot of data, and we were able to keep Clare fairly happy to quickly finish the echo. Unfortunately, since the chloral hydrate did not work effectively, from now on, Clare will have to have her echos under anesthesia, not sedation. Anesthesia is riskier and a bigger procedure.

Secondly, Clare's data was inconsistent. In general, her pulmonary side has not changed since her December echo, which is good. However, her descending aorta, where her surgical patch ends, has gotten worse. How narrowed is unclear because Clare's measurements, pressures, gradients, all those fancy numbers were inconsistent. So Clare is going to undergo her fourth cardiac catheterization in about a month. Once again, the cath will primarily be exploratory to evaluate her descending aorta and see what's going on. At this point, it is unclear what type of intervention will be needed for her aorta. Clare may have it balloon dilated during the cath. Hopefully this will be all she needs.

Thursday, January 19, 2006

Yogurt Queen

I can't really say Clare is making great strides with her eating, but she has found an obsession - yogurt! It's to the point where Clare doesn't really want to eat any of her other solids, especially not the yucky oatmeal anymore. She doesn't eat tons of the stuff (maybe one tablespoon a day), but she loves to eat her yogurt at dinner followed by her dessert of yogurt drink. And the mess she makes is incredible! Luckily for me, Clare has also decided that Daddy is her preferred feeder, so he has the responsibility to clean that face after her meal!

Cheers for Clare

Clare sat independently for 5 minutes today! And she did this twice! Yeah! (I even got the second time captured on video tape.) Jamie had his "girlfriend" Elizabeth over to play, so the two toddlers cheered Clare on. I don't know who was cuter - Clare looking around with a surprised look on her face like "what am I doing?" or Jamie and Elizabeth jumping up and down like maniacs and clapping their hands!

Friday, January 13, 2006

Date Night

S~Well, Teresa and I finally got to go out for a night to ourselves, first time in 9 months (not including when Clare was in the hospital). Special thanks to Christina! So as we saddled up to the bar at Olive Garden for some drinks and appetizers and did what every couple does when they are out for a romantic night, just the two of them, we talked about the kids! Actually we only talked about them for a little while and then forced ourselves to talk about something else. But as we were talking about Clare and everything that has been going on the last nine months, we both came to a realization of one of God's gifts. You have heard the old phrase: "Enjoy them now, because they grow so fast!" This is so true. Jamie is already turning his 3T shirts into belly shirts and is talking a mile a minute. It seems like just yesterday he was a baby just learning to crawl. We realized what a special gift God gave us in Clare. He has allowed us to enjoy the baby in her for a little bit longer than if she was a typical kid. What I mean is that at Clare's age, Jamie was crawling, saying Da Da Da Da, eating with his hands, and just trying to figure so many things out. Clare still has a lot of the baby things in her. She still needs to be held for almost everything. She is just starting to explore what her hands and feet are for. She is working really hard on sitting up. In the past, this has been very difficult for us because who wants their child to be delayed? We see other kids passing her developmentally. We see kids younger than her doing so much better at little things that it hurts. I have had such a hard time dealing with the developmental portion of the Williams. But last night we came to the conclusion that we should relish this extra time God has given us with the baby side of Clare. She won't always be like this. In a few years she may catch up developmentally. Then she will be where Jamie is now - asking us questions a mile a minute without taking a breath. So from now on when we see a baby who is maybe younger than Clare or the same age and can do so much more than Clare can, we are not going to be upset by the developmental delays of Clare, but instead be thankful that God has given us one more month of babyhood, one more snuggle in our arms, one more joyful smile as she pounds her cups against the T.V. tray. Kids do grow so fast, and these a days, a lot faster. So I'm thankful my Clarebear is helping us to slow down, helping us to hold on to our baby for just a little while longer.

Thursday, January 12, 2006

The Big Mac Diet

What do you do if you can't get your breastfeeding baby to beef up? You beef up yourself! That's right - I am on the Big Mac Diet, per orders from Clare's GI.

Meeting with both Clare's pediatrician and GI today has made me feel a little bit better about what's going on with Clare's weight. They are both very supportive of my breastfeeding (although they both were honest and said it would be easier if Clare took a bottle as well), and no one is discouraging me from stopping. Yesterday, I was feeling more down about everything. Today, I know that if someone told me to stop nursing Clare, I would refuse to because I do know in my heart that I am giving her what's best. Especially since that's her main source of nutrition! Can I help it if my sweet little girl wants her food directly from the source??

Clare gained 1.5 ounces this past week. The GI isn't thrilled with that amount (he wants to see her gain 3-4 ounces per week), but he said at least it's a step in the right direction. We are going to continue fortifying Clare's solids with formula, try to syringe-feed Clare fortified breastmilk (I think we're admitting defeat with the bottle), and I am going on my Big Mac Diet. If Clare will only take breastmilk from me, the only way to fortify that milk is for me to eat a high-fat diet. So, basically, add butter to everything, drink whole milk, and indulge in Big Macs at least twice a week. Maybe not the healthiest diet for me right now, but if it works for Clare, it works for me. The GI also gave me some tips on spacing out Clare's feedings to produce the highest quality milk (I think he was a lactation consultant in his previous life!).

I sent Shawn out for a Whopper and onion rings for lunch (okay, it's not a Big Mac, but I prefer Burger King). So forget about losing those last 20 pounds of baby weight!

Wednesday, January 11, 2006

Having A Tough Time

Clare has been officially termed "failure to thrive." I loathe that phrase. Because she IS thriving. Maybe she's not gaining weight, but she has come so far in the last two months in other ways. I think that's why I am having such a hard time with this whole feeding issue. We have noticed such an improvement in her since her surgery. Her energy level is up, she is so happy, she sleeps fairly well. Her therapist even swears she got a little giggle out of Clare the other day. But I feel as if we're getting nowhere with Clare's feeding. She was doing so well on solids, but has regressed over the last week to the point where at some meals, she refuses to eat. And, of course, this is a crucial week where we need her to gain some weight to show the GI that Clare is gaining, just slowly. I also can't help but feel personally responsible for Clare's lack of weight gain. I know part of that is irrational. I don't know if other breastfeeding mothers feel the same way, but I do feel responsible for how Clare grows because she is nursing. I can't help but wonder sometimes if I did Clare a disservice by exclusively nursing her for so long and not at least introducing a bottle from day one. But I know I can't second guess myself. I know that I had no idea what the future held for Clare and could not predict that we would be at this point. And there are many formula fed babies who are termed "failure to thrive," so I cannot blame myself. But I am really starting to hate the question - "Could your milk supply have gone down?" like it is my fault.

Tomorrow we have our second GI appointment. I pray that Clare has gained at least one ounce. Then maybe I'll feel better.

Tuesday, January 10, 2006

Sitting Pretty

Clare sat independently for about a minute today! Big hooray!

Clare's therapist has been working hard with Clare on sitting, and Shawn and I have continued this work outside of therapy. We bought Clare a Bumbo seat (not to be confused with the Bumble, Jamie's favorite character from the "Rudolph" movie) which she loves. The Bumbo supports her snugly so she can sit up and play the way she wants to play without having to use all her energy for trunk control. We have noticed that, probably due to her low muscle tone, Clare cannot usually work on two things at once. Take eating - she cannot hold herself up in the high chair and then concentrate on using her mouth muscles to eat. So she eats in her bouncey seat. Same with sitting - she either sits in the Bumbo or we support her ourselves while she plays. It allows Clare to play at her age level so she continues to develop cognitively. Of course, we still focus on her sitting minus the Bumbo, but it's a great support for her. It's been awesome to use so we can play together as a family without Clare having to lay there.

However, today, she sat without support for what seemed like an eternity (and most likely was only a minute!) and played with her Fisher Price aquarium bowl with Jamie. She didn't even seem to realize that I had taken my hands away (I had been supporting her hips). I was so excited!

For more information on the Bumbo seat, go to

Thursday, January 05, 2006

Weight Troubles

At the GI specialist's yesterday, Clare actually lost an ounce from the day before. Hopefully it was just a fluke thing and that her weight is not actually going down. The GI is concerned about her lack of weight gain. Although she is healthy right now, if she gets into a rut with not gaining weight, she will continue in a downward spiral and grow weaker and weaker. Clare is being tested for a bunch of different gasto problems. In the meantime, the GI gave me some tips on fortifying the little solids she currently eats to up her calories. We are also going to try introducing a bottle again (although I am not hopeful given Clare's track record and stubborness). This way we can fortify breastmilk as well for her. The key is to increase her calories.

Clare has no symptoms that there is something else going on with her internally. The GI believes that her poor weight gain is due to the fact that, at her age, she needs more calories than she can physically take in (because of her low muscle tone). This is why she nurses constantly. She is doing better eating solids (and her variety is increasing), but she tires of eating after a couple tablespoons. But we are going to continue onward. I am trying so hard to keep a positive attitude here because, if this is unsuccessful, then she will most likely have an NG tube reinserted through her nostril. I really don't want to come to that step.

Tuesday, January 03, 2006

Introducing Doctor Number Six

Clare is seeing yet another new doctor tomorrow. Not counting her eye and ear doctors (who we only see once a year), Clare is meeting doctor #6 - a pediatric GI specialist.

Clare had her follow-up with the geneticist today. He is pleased with her overall progress, but is very concerned about her poor weight gain. We were so excited a couple weeks ago that she had gained a few ounces, but now her weight has plateaued again (she has not gained any weight since that appointment). Since she has been eating solids for a few weeks now, the doctor is surprised and concerned that she has not gained any more weight, especially since she is now two months post-surgery. So we have a referral to the GI doctor. Luckily, he had an opening tomorrow, so we are getting in right away. We have applied to the State (through Clare's Early Intervention provider) to have a swallow specialist and nutritionist come out to the house to take a look at Clare, but hopefully this will make things go faster. (Although we are extremely grateful for all the free services provided to us, it does take forever to get anything accomplished through the State.)

I am kind of stumped as to what the plan will be from here. We are trying to up Clare's caloric intake through solids, but she will only eat so much. We are having a little more success with the sippy cup, but not enough to supplement. And I personally feel that Clare nurses ALL THE TIME! The geneticist is concerned that Clare is not properly absorbing the nutrients. So we await what the GI says...

Sunday, January 01, 2006

Happy New Year!

Happy 2006!

As we look back at 2005, it was a LONG year. We had so many ups and downs, challenges and rewards. I wouldn't trade a moment of it. Even that dark night after Clare's surgery when I thought our worst nightmare was becoming reality. 2005 made us a stronger family. It made Shawn and I stronger in our marriage and stronger in our faith. 2005 gave us the most beautiful baby girl who has taught us so much in her first nine months here on this earth. And I know she has so much more to teach us.

Happy New Year! We are all looking forward to what 2006 will bring.

Our Other Angel

This blog is primarily dedicated to Clare and our family's journey with her through Williams Syndrome. But we do have another sweet angel in this house as well. I know I don't have to explain how loved our beautiful Jamie is by all who know him. Jamie is going to be three at the end of January (hard to believe!), and we are so proud of the little boy he is growing up to be. Jamie is a wonderful big brother to Clare. I could not want a better brother for my little girl. Yes, we are working on sharing (both toys and his parents' attention), but Jamie loves his sister so much.

Clare woke up from her nap this morning on the grumpy side. Jamie sat with me on the couch and talked to Clare (in a high voice, as Mommy and Daddy usually do), gave her hugs and kisses, and shared his toys with her (especially his prized dinosaur light necklace) until she started smiling and blowing raspberries at him. Just as Jamie loves his sister, Clare loves Jamie. She adores her older brother. I hope Jamie and Clare always have a great relationship, and that he is always there for her, especially when she's grumpy and needs someone to make her smile!