Sylvie is A-OK!

Thanks so much for all your concern and well wishes! Yesterday's procedure went very well. We got to the hospital around 6:30am for our 7am appointment so we had to wait a bit before things got going. Poor Sylvie was irked that we refused to give her her morning milk & CIB and kept very slowly and deliberately saying/signing: "I...want...milk." as if we were maybe just having trouble understanding her request. Considering we've spent a great deal of time and effort on helping her to gain good communication skills, I was doing my best to let her know that we did in fact hear what she was saying but that she just wasn't allowed to have anything to eat or drink before the procedure because the sedation would make her nauseous. Her response? "I...WANT...MILK!" 

So Theron and I just did our best to distract her until the nurse came to escort us back to what would be Sylvie's recovery room. Once there, the nurse went over the specifics of the procedure and what to expect afterwards and asked if we had any questions. Then another nurse, Steve, came in. He informed us that he would be the nurse in the room with Sylvie during the procedure and also asked if we had any questions. (You gotta appreciate the fact that the doctors and nurses at CHB like to keep the parents informed!) Steve took our cell phone numbers so he could keep us updated on the status of the procedure. Finally, Sylvie was given an oral sedative that she did not at all care for and after a bit she grew drowsy. When she finally succumbed to the soporific, Steve gathered her from my arms and took her off for prepping. Theron and I went down to the main floor to grab some much needed coffee and overpriced but delicious nibbles at Au Bon Pain. Since the cath lab waiting room had two big signs that stated NO FOOD or BEVERAGES, we hung out in the seating area by the big fish tank in the lobby to eat. 

To pass time and try and keep everyone updated on the situation we'd brought our laptops and made use of the hospital's wi-fi. Shortly thereafter we got a call from Steve saying that Sylvie was fully prepped and they were preparing to place the coil. Pretty fast work! We weren't sure if wi-fi was available in the cath lab waiting room so Theron remained in the lobby while I went back upstairs. About 30-40 minutes later, Sylvies cardiologist Dr. Lang came into the waiting room and told me everything had gone splendidly and that Sylvie would be able to see her shortly. I went back downstairs to fetch Theron and when we got back upstairs, Sylvie was in the recovery room, completely zonked. Steve informed us that they'd had to give her another dose of sedative right at the end because she'd started to come around while they were removing the catheter and as a result she'd most likely be out for a while. She did sleep a great deal waking up occasionally for longer and longer periods. We started giving her water which didn't want to stay down at first. Karen, the nurse who cared for her during the recovery phase, gave her some anti nausea meds in her IV which helped. 

 Around 4:30pm Sylvie had an xray to ensure that the coil hadn't migrated and was staying put (it was fine). Then Dr. Mazwi, the cardiologist who had assisted Dr. Lang, was kind enough to show us some images--both still and video!--of Sylvie's procedure which was pretty neat to see. He also told us the repairs from her surgery in '07 looked perfect and that she wase unlikely to require any further surgical interventions. Yay! Since both the xray and the puncture sites from the catheterization looked good we were free to take her home after a final dose of antibiotic and Tylenol. She got a little bit sick again in the car and after we got home. We were trying to gradually reintroduce her to just liquids but she began all but begging for real food: "Chip!"...Pizza? Pizza!"..."S'getti!"..."Lunch!"..."Chicken!" We started off giving her just some milk and CIB and she did throw it up after a bit but I think it was because she'd had a coughing fit and gagged more than because her stomach was still upset. We waited a little bit longer and gave her more milk. When that stayed down we gave her some goldfish crackers and then some beef broth and a little bit of white rice from the Chinese takeout we'd ordered for ourselves. Thankfully, there were no further upchucks and we all slept pretty well last night. Sylvie seems perfectly fine today but per doctor's orders we're keeping her home from school until Thursday. Right now she's chowing down on chicken nuggets, mixed veg and grapes while singing her own particular version of "I've Been Working on the Railroad." All is pretty right with the world if you ask me!

Second---and hopefully FINAL--heart procedure

Tomorrow morning, Sylvie will be having a follow up cardiac procedure to close off the PDA that was unsuccessfully ligated during her open heart surgery last year. Luckily, this procedure is much less invasive. A tiny stainless steel wire, or coil, will be placed in the PDA via a catheter threaded through the femoral artery and vein via a small incision in Sylvie's groin while she is under concious sedation instead of general anesthesia. We've been assured that Children's Hospital performs several of these procedures each day and that the risk associated is akin to having one's tonsils or appendix removed. In fact, it's considered an outpatient procedure in most cases and in all likelihood we'll be on our way home by late afternoon.

While we are not 100% relaxed and at ease with the situation by any means, we are far less freaked out than we were last time. However, any and all thoughts/prayers/healing energies etc you'd care to send our girl's way tomorrow are very much appreciated!

Long overdue post part 2: School is IN..and off to a bumpy start

Because of Sylvie's stomach bug, she unfortunately missed her last EI playgroup on Monday and what would have been her first day of school on Tuesday...so it wasn't until Wednesday that our girl began her student life. Theron and I took her into school so that we could meet the teacher and her aides and see what the classroom was like. It was quite spacious and had it's own bathroom--a side benefit of this school is that they help potty train! Sylvie seemed immediately to feel at home and wandered around the room looking at all the varied activities available to her. Once the other five kids arrived and the teacher got them all together for their morning circle, Theron and I snuck out marveling at how amazing it is that our daughter is in school!

I dropped Theron off at the T station so he could get to work and then I went home to our weirdly empty house. It was just a few hours later when I got a call for the school nurse; the teacher had concerns about Sylvie's hands being cold and bluish. I let her know that it wasn't an unusual occurrence for Sylvie and that I too had poor circulation in my extremities. I think they were being extra cautious because of her history of cardiac issues which I definitely appreciated. When the school bus (which is actually a van) dropped her off later that afternoon, she seemed very happy to be home but not especially tired from her first full day at school.

Each child in the class has a folder that comes home each day with daily status reports for us parents; if the child had a good day/tired day/hard day what activities they participated in how much (if any) of their snack or lunch they ate etc. There's also usually a personal note about any special accomplishments or troubles on that day. They kept things light on her first day and basically just let her explore the room on demand. According to the day's note, Sylvie especially loved the rice table and classroom computer!

Sylvie's second day was the bumpiest so far...literally. About an hour after we put her on the bus to school, I got another call from the nurse; this time because Sylvie had fallen and hit her head right after arriving at the school. Apparently, the teacher had taken her off the bus and was helping another kid off who decided to make a break for it in the direction of the street. In grabbing the runaway, Sylvie was accidentally knocked off balance and fell. The nurse said that Sylvie was fine but had a large goose egg on her forehead and that the teacher felt terrible. Of course I wasn't thrilled to hear that this had happened but I am aware that accidents do occur and there have been days when Sylvie sported two lumps on her forehead from tumbles she took at home so I assured the nurse that as long as Sylvie was ok then I was ok too.

Guess who called me AGAIN a few hours later?
Yup.
The school nurse.

Sylvie had bumped her head a second time, this time after tipping over backwards in her chair. The nurse assured me that she'd checked her out again and that Sylvie was fine...but that the poor teacher was practically in tears at this point!

Despite her bumpy second day at school, Sylvie came home in a fine mood. And though she was indeed sporting an enormous scraped knot on her forehead her 'voluminous' hair seemed to have provided enough cushioning to prevent a bump on the back of her head.

Sylvie has been a preschooler for almost a month now and seems to be enjoying it...and we've not had (and hopefully won't have) anymore calls from the school nurse!

Long overdue post part 1: Sylvie is THREE!!!

Sylvie's birthday fell on a Tuesday this year and since we wanted to have a party, we decided to celebrate a couple of days early on Sunday. We knew we'd have several small children ranging in age from 1-3.5 yrs, we wanted to make sure that they'd all be kept busy (and happy!) so we set up two play areas: one in Sylvie's room and one upstairs. The upstairs play area had a pop-up house/ball pit, tubes to crawl through and even butcher paper on the walls with a large can of crayons at hand for any aspiring muralists. Plenty of fine and gross motor therapy for all, heh.

All told we had about 25 people at the party and everyone seemed to have a great time. Sylvie enjoyed herself but seemed mostly oblivious to the fact that the party was for her. Still, she did run around saying "happy birthday! happy birthday!" at random intervals which was adorable. I managed to get a party hat on her (briefly) and she cracked up at her reflection and said "happy birthday!" a few more times because the pointy hat symbolizes birthdays to her ever since we attended baby B's 1st birthday in December where many of the guests wore the hats.

We had one minor upset during the cupcake eating when Sylvie gagged and threw up. The mess was mostly contained on her booster seat tray and we were able to whisk her off to the bathroom for cleanup and a change so quickly that almost no one knew what had happened. We kept an eye on her for a bit but after a while we thought (as it turns out, incorrectly) that it was just a case of 'too much birthday' as she went right back to being her smiley self. When it came time to open presents, Sylvie was pretty 'meh' about it but Sara's enthusiasm as our self-designated helper more than made up for her lack of interest. Sylvie received many fabulous gifts including cool clothes, fun books, art supplies, a scribbly spiral pen, a wooden sandwich set, character dress-up magnets featuring Elmo and Zoe, a bucket o' play-doh fun...(plus many other things that I hope the people who gave them will not be offended by my not listing!)

The party eventually wound down and everyone headed home. R and A stayed a bit longer and helped with the clean-up (thanks guys!) before they too departed. All was right with the world until later that night, about 2 hours after Sylvie had gone to bed, when suddenly we heard her coughing...followed by the unmistakable sound of her vomiting. Turns out the cupcake upchuck from earlier in the day was not an isolated incident as we'd hoped because the poor girl was unhappy-go-pukey all through the wee hours of the morning. This also alerted us that Sylvie's birthday soiree that day had been a possible disease vector because it was a little too coincidental that Theron had puked his guts out 2 nights prior and that he'd likely had a GI bug and not just food poisoning as we'd originally believed. (We learned later that only one party guest ended up being sick as well and her parents thought she could just as easily have gotten it from another friend she saw that same day.)

Sylvie stopped throwing up around dawn but was completely wiped the whole next day and developed a high but short lived fever of 102 that afternoon. I made sure to keep her hydrated and cooled her off with a damp cloth during the worst of the fever and after a good nights rest she was much better the following day.

Why living in Taxachusset is a GOOD thing aka the post with many abbreviations

Sorry for leaving it so long between updates, especially after the events of this past September. At least I'm sure you all know that no news is good news, right? Anyway, Sylvie is doing fantastically well and is pretty much fully recovered from her surgery. Most of the swelling is gone and the scar is healing nicely. We saw the pediatrician today and she recommended rubbing Mederma on the scar to help fade it. We saw the cardiologist last week and he had Sylvie's chest xrayed --which she hates with a PASSION--for the zillionth time. She fought so hard during the xrays that two adults (me and a tech) couldn't hold her still so they finally had to put her in a contraption that enclosed her torso and forced her arms up over her head. She was seriously pissed about that and I certainly didn't care for it but it was necessary to get clear xrays. Upon review of the films, the doctor said it appeared that although he couldn't hear it through the stethoscope, she still had some excess fluid in her lungs. Not a big deal but she has to continue taking the Lasix and we're to go back and see him in another month.

How many therapists?
Because of Sylvie's Noonan's diagnosis and because of the developmental delays that can be associated with such a diagnosis, Sylvie has been seeing an occupational therapist (OT) and a developmental specialist. She also recently started seeing a physical therapist (PT) ans a speech therapist (ST). Each of these therapists comes for one hour, one day a week. All of this is through Early Intervention (EI). EI services are only provided up til age 3 when the public school system takes over and Sylvie has been receiving them since she was about 10 months. Payment is based on income bracket and ours is a whopping $60 for the year. She also attends a 2.5 hr playgroup every Monday through EI...they even provide a bus service that takes her to and from the playgroup. Not bad, eh? We also have begun attending a free, once a week music and movement class through the Malden/Everett Family Network. The class is 1.5hrs and they give us lunch! And a new toy (so far a mini kickball and a cheapie electric drum) every week!

On the advise of EI, we also recently had Sylvie assessed by Building Blocks. If you click on the link you'll see that they specialize in kids who are on the autism spectrum. We decided to do the assessment because Sylvie seemed to be displaying a few of the red flags associated with autism; seeming to become less, rather than more, verbal and less willing to make eye contact. There was nothing terribly off, but we thought it would be better to get it checked. The lady who did the evaluation said that while Sylvie has many strong skills she would like to see her socializing better and engaging in more imaginative play. She says that while she does not think Sylvie is autistic, she believes that she has Pervasive developmental disorder not otherwise specified (PDDnos) A diagnosis which is often given when all the criteria for autism or Asperger's syndrome have not been met but the child's difficulties are of the kind found within the spectrum of autistic disorder. As a result, on top of the 4 EI therapists she sees weekly, Sylvie will now have a 5th therapist working with her 2hrs a day, 3 days a week! When I mentioned this new diagnosis to her pediatrician today the doctor was incredulous, saying that Sylvie does not seem at all like any of her other patients with PDDnos. She also said that she thinks PDDnos is often "diagnosed" just so a kid can get the services. All I know is that enough people who are experts on child development have suggested that Sylvie would benefit from such services, so since she's getting 'em, we're taking 'em!

As I stated earlier, these services will only continue until Sylvie turns 3 whereupon it becomes the public school system's responsibility to address any delays or difficulties she may still have. There is a practically brand new preschool just a little over a mile away from us that from all reports is excellent. It opened just 4 years ago and is solely a preschool. Apparently the waiting list to get into this place is huge but because of Sylvie's "special needs" she gets an automatic spot. We had a meeting with the school just last week so they could assess Sylvie and see just what kind of needs she might have that would need to be addressed and we're supposed to go back sometime next month to go over their findings and create an Indivual Education Plan (IEP) for when Sylvie turns 3 and begins to attend the school. Hard to believe, but she'll be 3 in just over 4 months!

All of this talk of Sylvie's delays/issues/special needs sounds a lot scarier and upsetting then it is. I believe that our girl is one smart cookie and I doubt very much that these "delays" will have any effect on Sylvie achieving whatever she sets out to do in life. Sylvie has actually been a lot better about making eye contact and she is FINALLY starting to put two words together, if only rarely: "sing me" "help me". Though she may not be making sentences yet, her vocabulary is really rather extensive. She doesn't shy away from multisylliballic words, thats for sure : Heh'copter! Ock'puss! 'Nocerous! and though I haven't heard it myself, Theron claims she's said Ridiculous! several times...probably quoting from her Teletubbies book that has been loved almost to shreds. She quotes from it constantly saying "jabberjabberjabber 'tubbies jabber jabber veh much. Bih' Hug!" (Translation: Teletubbies love each other, very much. Big Hug!) She's really into fish right now and when Theron took her to the aquarium this past weekend, she was ecstatic, pointing in the tank and saying, "shock! tuh'tul! FISH!" Theron even called and left me a message so I could hear her excitedly naming the various sea creatures but sadly there was too much background noise for me to make it out.

Watch the video below to see Sylvie naming her sea creature magnets!

Long overdue update

Hi all.
I know I've really not been great about keeping up with the blogging for several months now and when I have it's been mostly "hey look what I can do" type stuff when I know that all you really want to see is "hey look what Sylvie can do!"

The answer to that is A LOT.

She's like a little monkey these days, climbing on and off furniture and up and down stairs...with supervision of course. She loves running around in our back yard or taking a stroll around the block. Unfortunately, she also loves picking things up off the floor/ground: hair, rocks, dirt, sand, lint, paper...this kid will eat almost anything if I don't keep an eagle eye on her. Even if I do keep a close watch, she's so quick that I still have spent time scooping crud out of her mouth. GAH! I hope this phase ends soon. I understand that small children learn a great deal via sensations but I just wish our child didn't favor so many new 'taste sensations' of non-food items!

She has long been over her Elmo obsession and now prefers the Teletubbies. She'll drag me to the TV at various times of day demanding, "Tubbies! Tubbies!" and I have to explain to her again that we don't have Tivo or On Demand (or cable) like our friends so we can only see the Tubbies at their regularly scheduled time. I fear this mostly goes over her head at this point though, heh. She doesn't much care for when the Tubbie tummy TV segment happens, but she performs her signature dance move (spinning in a circle) when they do their little synchronized dance. She has a Po doll that she loves and calls "Tubbie" and a Teletubbie book that she never tires of having read to her.

When she sees her reflection she says "Sylvie!" and when she's in the mood, she loves to give kisses. She'll turn your face to hers and purse her lips while making an 'mmm' sound. After you kiss her, she'll push your face away, then turn it back to her and repeat the process, sometimes several times in a row.

Her two most favorite toys right now are Bruin Bear and her Touch and Teach Busy Books. She asks for--and will play with--these all day long if we let her. It was a little monotonous for me at first but now I can pretty much block them out. (They tend to make Theron a little crazy however.)


My least favorite subject that I can't stop talking about
Surgery day (Sept 24) fast approaches...too fast and yet not fast enough. I don't want it to happen at all, but since it has to I want it to be OVER. We got our "Congratulations! Your child will be having open heart surgery with us soon!" packet in the mail from the hospital recently. It contained several brochures on the various areas of the hospital that we'll be intimately acquainted with. Sylvie's pre-op appointment in Sept 21 and will last 6-8 hours as they do various tests which may include while not limited to: echocardiogram, EKG, chest x-ray, blood work, cardiac MRI and lung scan. We will also meet with members of the cardiovascular team (which may include): cardiologist, nurse practitioner, cardiac anesthesia, cardiac surgeon and child life specialist. If we so desire (which I think we will) we'll be able to tour the Cardiac ICU and Cardiac Step-Down Unit. Sounds like a fun-filled day doesn't it? Then we get to go home and spend the weekend trying not to lose our shit.

While we can't help but be freaked out about the upcoming surgery, we are comforted by the knowledge that Children's Hospital Boston is a leader in the field of cardiovascular surgery, and they have a site specifically to help children and their families cope. It also helps that I have friends whose children also had surgical procedures performed there who have shared their experiences with me and have told me that both the staff and the care that their kids received were exemplary.

You can help support Children's Hospital by donating here.

May update

We visited Boston Commons and the public Garden with pals S and P 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 S sitting in the "picture spot" in S's house and some of Sylvie with P slip slidin' away at a local playground. The absolute best shots for May though are of Sylvie and P being VERY huggy while cooling off in P'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 K 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.