Wednesday, December 28, 2005

Christmas Blessings

Well, the unwrapping is over, but the fun has just begun. Shawn has this week off work, so we are enjoying our new Christmas presents and being together as a family. We have this one last week of the year to relax, with absolutely no appointments and nowhere we have to be before the crazy new year starts. January will be a month where Clare once again sees every one of her doctors. So we'll back to our busy schedule. I am going to cherish this week!

We are so blessed during this Christmas season for many, many reasons, but, most importantly, because we are together as a family and Clare is doing so well right now. She didn't have a clue what was going on Christmas morning, but she loved "helping" to unwrap presents and loved eating the wrapping paper even more. She enjoyed watching the excited antics of Jamie because he truly understood about Santa Claus this year!

During the remainder of this Christmas season (which we celebrate in our house until January 6, the Feast of the Epiphany, when the wise men came to visit Jesus, and Shawn's birthday - who likes to remind me again and again that he was born on the Feast of Kings), we wish everyone good cheer in the New Year! We also keep in prayer our fellow WS and "heart" families whose children remain sick or hospitalized and those who have lost their children this past year.

Sunday, December 25, 2005

Merry Christmas!

This is such a joyful Christmas for us - not because of gifts, not because of excellent food. This Christmas was joyful because of a little angel who liked the wrapping paper over the actual presents and a little boy who picked out a talking farm animal toy to give the Baby Jesus and told us, "I like Santa, he's my best friend!"

May the joyful spirit of the birth of the Christ child be with you all this Christmas.

Shawn & Teresa
Jamie & Clare

Saturday, December 17, 2005

Busy, Busy, Busy

You know you need some help when you have blogger guilt. I have not posted in a while! I plead extreme busy-ness both with our normal life and our pre-Christmas festivities.

Today we went to the Williams Syndrome Association New England Holiday Party. We went on a horse-drawn wagon ride through the snowy woods. The ride reached its destination at Santa's holiday party. Mrs. Claus passed out cocoa and cookies, while Santa talked to the kids. There were also elves, Christmas bears, and other characters to meet the kids. We even got to take a walk to see the reindeer! Jamie was shy of Santa at first, but then he asked him point blank, "Where's Rudolph?" We had a great time (until Clare decided she was too cold), and it was nice seeing the other WS families in our area again.

Clare had a sedated echocardiogram yesterday. We drove over to the clinic at the crack of dawn in snow and sleet with our cranky baby who had not eaten for a few hours. Clare did great during her echo, but had some vomiting from the anesthesia once she was awake. We were not allowed in with her for the echo (a first for us), so it was very reminiscent of our hospital experiences - saying goodbye to her, leaving her with the nurse and doctor, then seeing her once she was awake. The echo itself was fairly status quo. Her ascending aortic patch and pulmonary stents look great. Her pressures are creeping up again, though, so her doctor believes the narrowing is worsening in her distal pulmonary arteries (too small and too far into the lungs to be seen on the echo). Also, Clare's descending aorta is narrowing as well. Nothing unexpected, but Clare will most likely have another cath around her birthday. She has another sedated echo scheduled for mid-January, so at least we know she won't have anything before then. If Clare needs an echo before her first birthday, I am okay with that - I just want to be home on her birthday!

Clare has gained 11 ounces since coming home from the hospital. She is up to a whopping 14 lbs, 6 oz. now! We were excited to hear that. It's not a huge weight gain, but it's fairly consistent with how Clare was gaining before her surgery. My worries over her not gaining weight are subsiding. She just needed a little time to get back into her rhythm. She has been eating baby oatmeal for over 2 weeks now. She likes the oatmeal and has been increasing the amount she eats. After Christmas, I am going to start making other baby food for her. There will be lots of experimenting with different tastes and textures over here to find what works best for Clare! We are also going to meet with a nutritionist and swallow specialist to determine what's best for Clare with her diet and eating technique. Her recent lab work showed borderline hypercalcemia again, so now that she is starting on solids, we need to be cognizant of what foods are naturally high in calcium.

Clare continues to work on sitting up. We were hoping she would be sitting by Christmas (she will be nine months old on New Year's Eve), but it doesn't look like she'll make that goal. She will be reevaluated for her therapy at the end of the year, since it's been six months since she started (hard to believe!). Other than sitting, Clare has met all the other goals we set when she was three months old, including eating off a spoon, which I wasn't sure she would meet. You go, girl!

Another big issue we've been tackling is sleeping. Clare had been waking up every 1 1/2-2 hours at night for about two months. Clare's cardiologist told us we were not permitted to let Clare cry, so whenever she woke and couldn't fall back to sleep, I automatically nursed her to sleep. That created a little monster who didn't know how to fall asleep on her own. Since Clare will be six weeks post-op on Tuesday (I can't believe it!!!!) and her results look good, the cardiologist finally cleared Clare for crying. No mom wants to hear their baby cry, but it is very hard on me because for the first 8 months of her life, Clare crying was a very bad thing. Whenever Clare got worked up, I was petrified something was going to happen to her. Shawn and I debated whether to let Clare cry it out to help her learn how to fall asleep on her own. I just hated the thought of her crying to sleep after all she has gone through. When I asked for some suggestions on the Williams e-mail list, another mom with a young baby with WS encouraged me to forget about the Williams for a moment and just think of Clare as a regular baby. What would I do? Sometimes I get so caught up in how Williams syndrome is affecting Clare that I forget that she is also a "normal" baby in many ways. Although it's very hard to not spoil Clare and be more lenient with her, we know that we shouldn't give her special treatment (unless it's medically necessary). And in this case, it was okay to let Clare cry and she really needed to sleep longer stretches at night for her own health.

Again, Clare surprises us with what she is capable of. It took three nights for Clare to learn to fall asleep on her own. Now she's sleeping 4-6 hours stretches and waking only once or twice at night to eat. (And I am letting her to do that because my little peanut needs the calories!) It's an important lesson for me to learn to treat Clare normally. Obviously there will be many special circumstances in her life, but for the most part, I shouldn't expect anything less of her than I would expect of Jamie as a baby. It may take a little more time and we may use different methods of meeting goals, but Clare can do great things! Like sleeping through the night!

Friday, December 09, 2005

Snow Princess

Our snow princess, December 9, 2005.

Tuesday, December 06, 2005

Making Gains

We apologize for not posting as often. I am afraid we spoiled people by posting frequently during our hospital stay. This is a good thing because it means we're back into the swing of our everyday life, which does not leave a lot of computer time. Today, however, I am fighting a cold, so Jamie is spending the day with his grandmother. This is giving me some much needed rest (especially while Miss Clare is napping!).

We have been very busy with doctor's appointments. Everyone wants to see Clare post-surgery. In the last two weeks, she's had two cardiology appointments plus visits with the endocrinologist, pediatrician, and yet another new doctor, a neonatologist. There are some issues with her thyroid and calcium levels, so her endocrinologist has ordered some more lab tests done (we're awaiting the results). Her pediatrician is helping us focus on increasing Clare's caloric intake to aid in weight gain. After this hospitalization, Clare "fell" off the weight chart (she is now in the 1st percentile with her weight as compared to other babies her age - prior to surgery, she was in the 10th percentile). We will see him again in January for Clare's normal 9-month well baby visit. As long as Clare continues to gain weight (even if it's slowly), is progressing with solids, and remains relatively healthy, her pediatrician is not too concerned. Clare is being followed by a neonatologist right now primarily to administer the RSV antibody shot throughout the cold season. This monthly shot will help Clare fight off RSV, a very harmful virus to infants, especially those with health issues. Clare had her second cardiology check-up yesterday. Based on physical examination, Clare is doing very well post-op. Her cardiologist discontinued her Lasix medication, so now we are only on five medication doses a day! Quite an improvement from 12 immediately post-op. So, yes, we've been busy!

Clare also started with her therapy again. She still has physical restrictions, so we are focusing on eating. We gave Clare oatmeal for the first time last week. She still has trouble swallowing, but seems to like the oatmeal. She opens her mouth for bites and protests loudly if she wants more. That's a great step! I am expecting that eating solids will be a very slow transition, but we will get there eventually.

Clare is scheduled for an echo done under sedation on December 16. We are praying for more good news (such as everything is status quo and Clare can come off the blood pressure med).

Sunday, December 04, 2005

A Good Wait

S~ As Teresa and I look back at this past year, we realized we have done a lot of waiting... actually, that is putting it mildly. We started the year eagerly waiting for the arrival of Clare. Then we were waiting to find out what her diagnosis was, then we have done a lot of waiting as they performed her three catheters, and, lastly, waiting while they did the open heart surgery. Now as we are just starting the second week of Advent, we are waiting again. This time for something a little better - we are waiting to celebrate the birth of Jesus.

Teresa and I really enjoy Advent. We have an Advent wreath on our kitchen table. Every night, we light a candle and read about the upcoming birth of Jesus from a family Advent book. We have an Advent calendar that Jamie gets to open a door and pick out a piece of chocolate (which makes him really like Advent as well), and, this year, we decided to say a decade of the rosary together as a family. The important thing is that it is a quiet, peaceful waiting.

Yesterday, we went to the mall for a Build-a-Bear birthday party. So we decided to go a little early to bring Jamie to see Santa. Within ten minutes, both Teresa and I were done - done with the crowds, done with the lines, done with the rude people cutting us off so they can run into the Discovery Store to get the robotic raptor that will be broken by New Year's. (Jamie was fascinated by it, and we almost made the plunge.) Teresa and I have finished our Christmas shopping. We usually try to get it done before Thanksgiving. We do this for two reasons: 1. to avoid the crowds, and 2. so we can truly enjoy the Advent season. We spend our nights looking at the Christmas tree and village, or we get the kids in their pajamas and drive around looking for Christmas lights. So for those of you who have not finished your shopping, get it done and spend time with your family for the remainder of Advent. Do your shopping online, be done with it, and drink some eggnog in front of the tree. I hope I haven't stressed any of you out, but Advent is a time of eager anticipation. How can you do that if you are too busy shopping? Merry Christmas!