Thursday, April 22, 2010
After staking our claim to a circle of chairs and cornering the only wooden beads toy in the waiting room, we began to wait out our 30 minutes post-injections. The kids scored about 10 stickers from various receptionists (they have learned to bypass the Allergy counter and scope out the counters at the other end of the waiting room, hitting up the sweeter women who work at Internal Medicine and Family Practice). Clare went to the bathroom twice. The most sour-faced receptionist spoke to me once. ("I just wanted to let you know that the doors open out, so I don't want your children playing in front of them in case they get hit." Which they weren't, and which we know since we've been in the clinic about a thousand times.) I had to bring Clare back to our area twice after she stared down two adults (both texting on their phones, which fascinates her).
After bringing Clare back the second time, we saw them walk in. Another mom with her four kids in tow - two girls, two boys. And I knew instantly that there was something "up" with her youngest daughter. (No, I am not politically correct.) They sat in the next group of chairs. This mom's three oldest (all probably older than my kids) sat dutifully on their chairs while waiting for their appointment to be called. But the little girl made a beeline for us. Specifically for me and Violet, who was clutching one of her baby dolls. She was fascinated with Violet's baby doll. I helped her and Violet work out an arrangement over who got to hold the baby doll when. That's when I realized that Clare was standing in front of the other mom, giving her that big wide-eyed stare. I called Clare back, and the other mom came over, too. I simply stated, "Clare has Williams syndrome." Now I am not one to make those pronouncements to random strangers. I have never felt the need to broadcast that information. Even when I know people are wondering what's up with my child or ask questions, I rarely bring it up. It's not that I am embarrassed or I feel like we have something to hide. I just don't feel like it's relevant or makes a difference sometimes. Clare is who she is. But with this mom, I sensed a kindred spirit instantly. And I was right. Her reply was, "Bridgette has Noonan syndrome."
You see these other kids and their families sometimes. On the playground. At the mall. In the grocery store. And I always wonder. I wonder what syndrome has affected their family. I wonder what their journey has been like to get to where they are. I wonder if they sometimes feel all alone in this world. I wonder if they look at my child and wonder the same things about us. I am glad I said something today because it gave me the chance to talk with another parent. To exchange some details about our daughters' syndromes (Noonan syndrome is also characterized by pulmonary stenosis) and even gain some new insight into other forms of therapy (she told me about pet therapy). Just to have the reassurance that we are not alone in this journey, and there are others out there who understand.
Tuesday, April 20, 2010
Spring is here to stay in NH, and our wall garden is growing. (Although we did have snow one morning last week!) All the bushes from last year survived the winter and are coming back up and the new tiger lilies that Shawn planted at the end of summer are flourishing. We had gorgeous hostas in the front yard that were in danger of being excavated, but Shawn was able to get those unearthed and transplanted to around our deck. I hope they survive their move and bloom this summer.
Jamie's travel soccer began two weeks ago, and I am already exhausted. Two evening practices and one weekend game per week is a bit much, in my opinion, but I have to admit that his soccer skills are taking off. Jamie loves it - soccer is definitely his sport. He played two seasons of baseball and did not want to do it this year. Too much standing around and waiting! He is a kid on the move. We are going to try to catch a Revolutions game this summer (New England's professional soccer team). I never thought I would be a soccer mom, but here I am. Shawn and I ruled that the two older children are allowed a maximum of two activities or we would go crazy. So Jamie is doing soccer and his school's play, and Clare is doing ballet and the Special Olympics Youth Athletic Program has started up for its spring session.
We are at that time of year when everyone has their doctor's appointments. Jamie and Clare both have follow-ups with the endocrinologist in the near future (Jamie's is tomorrow with blood work... yuck), all four kids have their pediatric visits (annual physicals for the older three and Violet's 15 months well-baby visit), and Clare had her work-up with the new cardiologist a couple weeks ago (more about that in a moment). Other than Violet (who is healthy, walking, babbling, doing everything she should be doing and nothing she shouldn't!), I have a list for each child of what I want to discuss. Jamie's headaches have gotten out-of-control again. He has had a headache or migraine every day for almost a week now. His migraine medication does not always work, and I feel like every morning he needs Tylenol to even get out of bed. His allergies seem to be under control now that he is on allergy shots, so I can't blame it on that. Sometimes I feel that his week is too stressful between school all day, homework, school projects, and soccer, but it is still not normal for a 7-year old to complain of a headache on a daily basis and end up vomiting fairly frequently. I am ready to sit down with the pediatrician next week and figure out where to go from here. I think that Simon is starting to develop allergies as well. He had eczema as a baby like Jamie did, and there is a link between having eczema and developing seasonal allergies. (Shawn, too, has battled eczema and has allergies.) Neither Clare nor I have ever had eczema and we are not affected by allergies. Thankfully, Violet has never had eczema either, so hopefully the girls are out of the woods when it comes to seasonal allergies! Ever since the tree allergens have started full-force (and where we live is on a high level right now), Simon has started with the runny nose, congestion, and shiner eyes. I am giving him a small daily dose of Zyrtec, but can't help but wonder if we're just going down the same road as we did with Jamie. Jamie did not have his allergy testing until age 5, and I don't know if they can test Simon sooner.
I took Clare down to Boston Children's Hospital two weeks ago for another echo, EKG, and to meet the new cardiologist. It was a 9-hour trip (3 hours of lovely Boston traffic and 6 hours of hospital time), but worth every minute for the hour we spent with Dr. S. Dr. S is a highly-recommended pediatric cardiologist who specializes in cardiac defects associated with genetic disorders and Williams syndrome in particular. The excellent news is that Clare's echo and EKG confirmed what her NH cardiologist had told us. Her main pulmonary arteries have grown a tiny bit and her gradient measurements where her stents are placed are minimal, between 10-18 mmHg. (To compare, when Clare was very sick as a baby, her PA gradients were in the 60s). Clare's aorta still looks fabulous with a pressure gradient of almost zero (pre-surgery, Clare's aortic gradient was 125 mmHg - this means that if Clare's systolic blood pressure reading was 100, the actual systolic pressure going across her aorta would have been 225 - you do the math, not so good!). This just illustrates how "healthy" Clare's heart is now compared to where we were five years ago. Clare's only real problem right now is that her distal pulmonary arteries are hard to see on an echo and measure, and those little arteries are still small and narrow. The only way (other than a cath) for the cardiologist to get an idea of how those pulmonary branches are doing is through a lung scan and measuring her right ventricular pressures. Her last lung scan in October was excellent (which means the blood flow to each lung is fairly even) and, at this appointment, her RV pressures were less than 2/3 systemic. They are creeping up again, since in April 2009, the pressures were less than 1/2 systemic, but for now, they are still at an acceptable level. So, in regards to Clare's pulmonary stenosis, we are going to follow up with Dr. S in nine months for another echo, EKG and lung scan. In the meantime, Clare is still off her blood pressure medication and her readings remain borderline. Dr. S went into a very long, very thorough explanation of why sometimes a person may need a high blood pressure to ensure proper blood circulation throughout their body (an explanation which made a lot of sense to me and one that I had never heard before - this is why we switched cardiologists!). There is a slight possibility that Clare could have renal stenosis (narrowing in the arteries leading into her kidneys), so the next step is to have a renal ultrasound in a couple months. In the meantime, we will continue her off her blood pressure medication and continue to have the school nurse take measurements once a week and then fax the measurements to Dr. S. So there is your medical lesson for the day. Whew!
Wednesday, April 07, 2010
We are stagnant during the winter - maintaining some semblance of preserving our sanity while surviving the cold, snow, wind, flu, colds, and stomach viruses. But now that spring is around the corner, there is lots of change in store for us.
When we bought our house four years ago, Shawn and I discussed adding a double-car garage. We have the space for it, but always envisioned this as a project down the road. When we were pregnant with Violet, we dreamed about how awesome it would be to, not only have the garage, but add a master bedroom and bathroom on top of it. Once Violet was here, in her own room, and Simon moved into the bedroom with Jamie and Clare, we thought wouldn't it be wonderful to cut our existing master bedroom into two bedrooms. Then we could have a boys' room, girls' room, nursery (you never know!), and a guest room. As the kids get older, they could eventually have their own rooms. Dreams, dreams, and more dreams. Some dreams do come true! Any day now, they will be breaking ground for the addition. It's going to have everything we wanted - two-car garage, master bedroom, walk-in closet, master bath with a jacuzzi tub (that's mine!), mudroom, and our old bedroom will be converted into two rooms. We are blessed in so many ways, but we also have so many challenges in our life and have been thrown so many unexpected curve balls, that I am still in some disbelief that this is actually going to happen just like we dreamed it would.
We will be registering Clare for kindergarten next week for next fall. There is still so much uncertainty about exactly how this is all going to go. Clare's preschool teacher has been awesome discussing it with me as things come up, but I am such a planner and organizer that I hate the unknown part of it all. We, as parents, have definitely decided we want Clare to go to our district school, which is one of the best in the district. The only reason why I was not sold on this idea is because the kindergarten program is only a little over two hours a day. Right now, the special education team is planning on including Clare in a typical kindergarten classroom, so I was concerned about her being pulled out for services three hours a week. That's almost a third of her time in class. We could fight to have her placed in a full-day program at a different school, but I don't want to take her out of our district school and then transition her again in first grade. It's so confusing sometimes! You want to make the right decision for your child, but I honestly don't know what the right decision is. I want Clare to be included in a regular classroom, to be with the children she will be in school with for years, to have the chance to make friends. She needs all her special education services, but she also needs to be in her kindergarten class. She can spell her name now (drilled into her! C-L-A-R-E!), but has difficulty forming letters (part of that difficulty with fine motor skills), so she cannot write her name yet. She knows all her colors after months of working on it, but is still sketchy on shapes, numbers, and letters. She has made tremendous progress this year, but I think of where Jamie was when he was going to kindergarten, and Clare has a long way to go. I don't expect her to be where Jamie was at that age, but she is going to be with other children who are, and I just want her to be able to keep up. Clare has loved her preschool and has done so well in her self-contained classroom. I am scared of the unknown of placing her in a regular classroom. This is where the Mommy-protectiveness is kicking in.
Jamie was invited to join a travel soccer team this year. He was asked to play last year and we said no, feeling that six was too young to be on a travel team. After playing a season of outdoor soccer this past fall and currently wrapping up four months of indoor soccer, Jamie has demonstrated both that he loves soccer and that he has soccer skills. When his coach brought up the travel team again, at first we said no. After some thought, though, we decided to give Jamie the choice between baseball or soccer (he has played t-ball the past two springs). Jamie immediately chose soccer. It's a bigger time commitment than we've been used to, but I know it's going to be a great experience for Jamie. He has a terrific soccer coach and will be playing with many of the same players on his indoor soccer team. Plus it forces us to not plead tiredness and get some fresh air two nights a week after dinner and run around!
After watching Jamie play sports for two years, Clare is excited that it's finally her turn to have an activity just for her. She started taking official ballet classes two weeks ago and loves it. To test the waters, I signed her up for a little "Creative Movement" class at the YMCA over the winter. The girls do a little bit of ballet, then basically get to free-dance. She did this class for a few months. She paid attention, took it seriously (for the most part!), and loved every minute of it. Those were my three conditions she had to meet before I signed her up with a ballet studio. I know Clare will not be a ballerina. I know she will not be able to do everything at first, but I was more concerned that she would not be a distraction in the class. Clare did awesome, and I am so proud of her! (Not to mention that she looks so stinking cute in her leotard!) So we signed her up with a local ballet studio for a weekly class. She is in a petite ballet class with other 3-5 year olds and will even be in a show in June. Her class are playing the part of fish in The Little Mermaid. I was able to watch her class perform their little solo (it's literally about two minutes long!) last week, and thank goodness I had a squirmy Violet to also occupy my attention or I would have started crying. Clare was grinning away, doing her moves (don't ask me what anything is called), and so precious! She truly loves her dance.
And thankfully Simon and Violet still go with the flow! (Although Simon has stopped napping, which really ruins my quiet afternoons!) Some days are spent running around like crazy with the older kids' activities, that I cherish the calmer times I have with my little two. They are so sweet and their needs are so simple! I know our calm days are numbered in the near future once the addition gets under way!