Monday, June 11, 2007

May Sylvie photos with extra PDA!
Here at long last what I know you've all been waiting for, the photos for this past May! And let me tell you, there are some pretty darn cute ones this time. We visited Boston Commons and the public Garden with pals Sara and Peyton and us moms succumbed to a typical tourist photo op and snapped some shots of our offspring astride some of the duckling statues commemorating the classic children's book Make Way for Ducklings. I also got some cute photos of Sylvie and Sara sitting in the "picture spot" in Sara's house and some of Sylvie with Peyton slip slidin' away at a local playground. The absolute best shots for May though are of Sylvie and Peyton being VERY huggy while cooling off in Peyton's back yard. They were just so friggin' cute! These two kids have always been physically affectionate, hugging and holding hands (without any prompting for Kelly or I) but this time it was a marathon hugging session.

Medical Updates
Sylvie recently saw a neurologist because of concern that she'd possibly been experiencing absence seizures. On a few rare occasion, I had noticed Sylvie 'spacing out' for periods that seemed (to my admittedly untrained eye)to be longer than normal wool-gathering. My mother also noticed an episode while visiting a while back. Because of Sylvie's diagnosis, combined with a family history of epilepsy, it was recommended that she see a neurologist and have an EEG. My sister had had several EEGs because of her epilepsy (which she has since outgrown, which happens in some cases) and I had had one because of migraine headaches so i knew that the test wasn't painful or really a big deal. Sylvie was slightly fussy, but mostly cooperative while the technician applied the electrodes to her scalp. We'd been told to bring her in somewhat sleep deprived as part of the test needed to be conducted while she was asleep. Apparently we did a good job because she zonked before the tech was done applying the electrodes. After about 15 minutes or so they had to wake her up in order to get a wakeful reading as well and she was not happy about that at all. Despite Sylvie being cranky about her abbreviated nap, the test went smoothly and quickly and she even stayed fairly agreeable while the electrodes were removed. (The tech then did a partial hair wash to remove the goo that had held the electrodes in place but there was still alot left. In fact, it's been over a week now and despite sveral more washings, there is STILL some goo in her hair, but I have faith that it will all come out eventually!) We were told that the neurologist would examine the readout and get back to us in a week or so with the results, but he actually called the next day and said that the test was completely normal. Yay! While I know that the scan would only be indicative of epilepsy if she'd had a seizure recently and it's possible that she has had seizures, I'm not really going to worry about it. I've only noticed the 'space outs' a couple of times and I think if it was really a problem then they'd occur more frequently. And sometimes, a 'space out' is just a 'space out'!

Sylvie also saw her cardiologist recently and had an EKG and an echocardiogram. She'd had both of these tests before and (with the aid of a pinwheel and a sticky blue lizard toy and an Elmo DVD respectively) was pretty cooperative during them. When her cardiologist came to discuss the results with us he said everything looked the same as before which was what he expected. Then he said what I've been expecting/fearing he would say: there was no good reason delay surgery to repair the defects (which I previously discussed here). He also said it wasn't necessary to do it now either but that it would need to be done eventually, and kids Sylvie's age typically recovered quicker after surgery. Theron and I had discussed the future likelihood of Sylvie having heart surgery and we both agreed that we wanted it done while we were still in the Boston area since Children's Hospital has some of the best doctors in the world and also before we had another child. We both know that the surgery will be an extremely stressful event for us, but at least Sylvie should be mostly oblivious to what's happening because of her age. From what the cardiologist told me, one of the reasons he is encouraging the surgery now is because young children don't seem to have the same 'psychic' pain during recovery as older children or adults do because they don't realize that it's in any way strange to be up and playing the day after open heart surgery!

I know all about that 'psychic' pain because words like "open heart surgery" and "heart/lung machine" would frankly scare the shit out of me when used in relation to anyone I care about...but especially our tiny sweet child. I held it together at first while talking to the doctor, but while we were going over the step by step for the day of surgery I lost it for a bit. I'm sure these doctors are used to the reaction given their line of work and he was very compassionate and reassuring. He said that there were several surgeons at Children's that just did this kind of operation, that they were all topnotch and that Sylvie would most likely be out of the hospital less than a week after the surgery. I occasionally read a blog called Wonderbliss written by a woman whose son was born with a severe heart defect and has had a couple--and will require more--heart surgeries. I'm sure that Sylvie will make it through the surgery just fine but reading the stories this women posts as well as seeing photos of her healthy, thriving (and adorable!) son helps to ease the fear I can't help but feel.

We don't have an exact date yet, but the surgery will be sometime in September. I'll keep you posted.

On a brighter note...
Sylvie's first ever dance recital is this Saturday! They don't allow photos or video during the actual recital but the dress rehersal was on Monday and we got some photos and video then of Sylvie's group shaking their maracas (no really) to Jump in the Line. Sylvie did not seem the least bit fazed by being on stage under blinding lights and blaring music but neither did she seem to care to perform, preferring instead to watch the other girls in her troupe, but she still looked very cute in her costume! We'll have photos--and maybe even a bit of video!--posted soon.

1 comment:

erika said...

I'm glad Sammy can give you some hope! Please - feel free to email anytime (or call - I can give you my number). It's not an easy thing by any means, but I'd be more than happy to listen to you ramble, answer any questions, let you freak out and whatever else you might need. :-) It's true - they do bounce back much faster when they're younger, and the emotional impact on them seems less the younger they are.

CHB rocks. We had a cardiology appt this morning and each time we visit I am reminded of how grateful we are to live so close to such an amazing place.