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!
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!
