Monday, January 17, 2011

What Has Clare Been Up To??

This is a VERY common question in our house these days! Clare is going through a... shall we say... challenging phase right now. If she is quiet for more than five minutes and we cannot physically see her at that moment, chances are, she's into something she's not supposed to be. (Like I just stopped her from squeezing all the gogurts out onto the kitchen table.) We talk a lot about impulse control, ask first, don't touch, quiet hands, blah, blah, blah. She can parrot everything back to us, but actually controlling herself is another matter. On the plus side, I have ample opportunity to practice the virtue of patience.

We were in our medical lull for a few months, but now it's been back-to-back doctor's appointments. Clare has been seeing the pediatric dentist at Children's Hospital Boston. Shortly before Christmas, her x-rays showed that, with her special toothpaste, her cavities have sealed themselves and were not near the nerves, and we have successfully avoided the OR to have the cavities filled (at least for right now). She can now follow up with our local pediatric dentist. As blessed as we are to be so close to Boston, no trip to Children's Hospital is short or easy, and the pediatric dental office has been the most grueling process so far when it comes to logistics. I am glad these monthly visits are over!

Almost five and a half years after her diagnosis, Clare finally went through the Williams Syndrome Clinic out of Children's Hospital Boston for the first time. We heard varying reports about the clinic and never felt particularly compelled one way or the other to take her. The one thing everyone agreed on was that it was a long, exhausting three-day process. However, after attending the WS convention this past summer and then Clare starting kindergarten, we agreed that it was now the time to bring Clare to the clinic. Due to the weather, Shawn ended up staying with Clare in a hotel in Boston for two nights. They were able to make it home the third night and ventured back out early the next morning. I am glad we waited a few years before doing the clinic because I doubt Clare's stamina could have lasted for the L-O-N-G three days (actually four total since she had the speech evaluation the Friday prior). Since Clare's medical care is very well-supervised, the clinic for her was primarily an evaluation of how she is doing in other areas. She was evaluated and tested with speech therapy, occupational therapy, physical therapy, audiology, behavioral psychology, and neuropsychology. Preliminary reports are that Clare is doing well as a whole (and tested well compared to other children with Williams syndrome). We have to wait a few more weeks for the full reports, which will then give us a chance to see what changes, if any, need to be made at school.

Clare also had her cardiology appointment and echocardiogram while at the WS Clinic. It has been nine months since her last echo (the longest stretch ever!), so we are anxiously awaiting the results. Due to the structure of the clinic, Clare's cardiologist did not review the echo prior to meeting with Clare and Shawn, so she could not relay the results immediately. Now, a week later, we still have not heard back from the cardiologist. (And, yes, we have called, e-mailed, and Shawn stopped in on their last day of clinic.) Part of my brain believes that Clare's heart remains stable and we can keep chugging along. She shows no symptoms at home of having any trouble and her blood pressure has been relatively under control (without any meds). However, the other part of me keeps saying that it has been over three years since Clare had a cath done, so our time has to be up soon. At some point in the future, Clare will need another open heart surgery to remove the existing stents in her pulmonary arteries and insert bigger ones. When the initial stents were inserted at five months old, the cardiologist predicted then that Clare could possibly get to the age of 10 before that would need to be done. It's hard to believe we are already over halfway to that point. So I will breathe much easier once we hear the echo results.

In new developments, I am taking Clare up to Children's Hospital at Dartmouth (about an hour north of us) to meet with her new doctor, a pediatric nephrologist. Clare had a renal scan performed last summer in Boston which showed calcium deposits in her kidneys. After that finding, Clare underwent multiple rounds of blood work and urine tests to monitor the calcium in her body. Her blood calcium levels have been slightly above the normal range, so she is considered to be borderline hypercalcemic. Her urine tests showed that she is excreting calcium in her urine as well,. Many children with WS have problems with hypercalcemia (for some reason, individuals with WS have trouble absorbing calcium properly). Clare was borderline hypercalcemic when she was a toddler, but was always asymptomatic, so we never did anything about it. Now, however, since the calcium is showing up in her blood, urine, and kidneys, it's time to do something. Clare's endocrinologist did another round of blood work and urine tests a couple weeks ago (since he had to test her thyroid levels, do it all with one stick!), and I have a CD of Clare's renal scan from last summer to bring with us. Clare will have another scan (for comparison) tomorrow, then we will meet a few hours later with the nephrologist to discuss the results and what treatment, if any, is necessary. I am just praying that we do not have to alter Clare's diet too much. Being a limited food eater, dairy is a huge component of Clare's diet - she gets the majority of her calories from milk, macaroni and cheese, cream cheese, and yogurt!

I will be glad to get all these appointments behind us and return to our schedule. Due to the clinic, snow days, and holidays, Clare will miss almost two weeks of school. We are all craving our routine!


Ava's Grandma Kim said...

Hi, Teresa! I have been missing my my blog-friends so much! I can't tell you how good it felt to reconnect by reading your blog today. I got a little teary-eyed:)Your babies are looking so beautiful and have grown so much. Clare is still my favorite, of course. Can't help it; she reminds me of my little Ava. Also, congrats on baby #5! Take care, Teresa.

Noel said...

I really hope you get some results soon from cardiology( the waiting always makes me crazy. Thanks for the update and I will keep you in my thoughts and prayers!