This weekend, Quentin, Stellan, Ellie and I went to the Hamptons – a first for all four of us. We packed ourselves into a van along with another French family with two kids, a boy and a girl, and headed to East Hampton on Friday night. We stayed at an adorable dog-friendly guesthouse run by a lovely woman with five dogs of her own, and spent the weekend doing beachy family things.
We climbed sand dunes (which, by the way, is extra complicated when one person is on crutches, another one can’t walk and is finally getting heavy, and the dog wants to run as fast as possible in every direction at once), looked for sea shells, ate lobster rolls, played in the park, and went to a farm and got lost in a giant corn maze. Stellan loved being around the big kids, especially Solene, who is four and who loved to read to him and just be next to him. Stellan could really use a big sister.
On Saturday afternoon, while wandering around the little town of East Hampton, we stopped at a playground. Playgrounds are kind of tough for me sometimes because I see all the little kids Stellan’s age running around, climbing things, falling down… none of which Stellan can do yet. So first we went on the big swings together, which he always likes. And then, on a whim, I decided to put him into one of the “baby” swings on his own. This usually doesn’t work because of Stellan’s lack of head control – he usually flops his head back. But yesterday he sat forward instead, grabbed the front of the swing, and went swinging like a boss.
When Stellan was about six weeks old, a small red dot appeared on his lower right eyelid. It slowly grew to a larger dot and as it became darker red and started to protrude a bit, Quentin in particular became alarmed. He insisted we take him to the doctor, which we did, and where we learned that it was likely a hemangioma and referred to a vascular specialist.
The vascular specialist, a very lovely woman named Dr. Blei, reassured us that this hemangioma was benign but may continue to grow, which was only really a problem since it was so close to Stellan’s eye. She suggested trying a topical solution (Timolol), which we dabbed onto the spot twice a day. She also suggested we take Stellan to an opthamologist to make sure the hemangioma wasn’t causing any vision problems or an astigmatism.
Which is how we ended up in Dr. Steele’s office. He took a look at Stellan’s eyes, further reassured us that we were doing the right thing in terms of treatment (the more invasive option was a laser), and told us that not only was there no sign of any astigmatism, but that Stellan’s vision was 20/20.
Less than six months later, we were back to Dr. Blei and Dr. Steele for a follow up. By that time, the hemangioma had practically disappeared and we had begun to taper off the medication. But we had much graver news, because Stellan’s MRI and diagnosis had come the month prior. When we think back now on our worry over Stellan’s little benign hemangioma, Quentin and I have to laugh sadly at ourselves. What was such a big deal and so scary was nothing compared to what was to come.
Both doctors were very supportive. Dr. Blei directed us to a wonderful neurodevelopmental pediatrician (who, like all of them it seems, did not accept insurance) and Dr. Steele looked us straight in the eyes and said, “Don’t let anyone ever tell you what your kid won’t be able to do. He will surprise you and everyone else.” In other words, he made us cry, in a good way for a change.
Fast forward a year and Stellan’s hemangioma has reappeared, which is unusual. So we visited Dr. Blei again last week and we are back on topical Timolol twice a day. We also saw Dr. Steele again, partly for a follow-up on the hemangioma, but mainly because our genetics doctor asked us to have his eyes checked again. Apparently certain syndromes have very specific issues with the eyes.
So Monday morning we were back in Dr. Steele’s office, which Stellan loves because there are lots of fun things to look at. Of all the things, Stellan liked the computer the best (anything that might play Sesame Street for him is an immediate draw), and that’s fine with me as long as he’s sitting up and holding his head up.
Dr. Steele checked out his eyes, did various little tests, took lots of notes, and finally said to me, “Your son is perfect, as far as his eyes are concerned.” Nothing is ever perfect with Stellan, clinically or medically speaking (his looks, however, are a different story), so I almost didn’t know how to process the information, aside from a warm feeling that overtook me, knowing that Stellan is lucky enough to have his dad’s perfect vision and not mine.