Wednesday, November 07, 2007

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!

Tuesday, September 11, 2007

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.


Monday, June 11, 2007

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.

Saturday, March 17, 2007

Holycrap-olageeWOW! Sylvie's done gone and turned TWO!

While we kinda sorta went all out last year for Sylvie's birthday--lots-o balloons, first birthday themed napkins and tablecloth with color coordinated cups and plates and even a bunch of tulips--this year we kept it low key. So low key in fact that we did nothing, heh. Well, I did make some cupcakes but it wasn't until the Wednesday following her birthday on a Sunday.

As you can see from February's photos, Sylvie is doing fantastically well. She's finally topped 20lbs (and 2oz!) and is 31" long/tall. At a follow up visit last week with GI, the doctor was very pleased with Sylvie's growth and said that after one more follow up in 4-6 months, we would likely be able to drop her from our list of specialists! Yay! Now that she has some teeth (8) with 2 more soon to pop through, she's really enjoying foods with crunch, like apple or bell pepper strips.

Sylvie seems somewhat stuck at the single word stage of talking. I figure she thinks she's gotten by pretty well with one word/sign and pointing...why upgrade? Long strings of indecipherable jargon still spill from her mouth on a regular basis though so I have faith that one of these days soon the mommy/daddy translator node will kick on in her brain. She likes to use action words while doing the actions, or at least her version of the action. For example: "Kick! Kick!"--said while kicking a ball around the house or "Jump!"--said while throwing her arms up in the air and occasionally kicking one leg out simultaneously. She does the "Jump!" one a lot at dance class.

A new trick she has learned is to grab us by the hand and lead us to whatever snack/activity she is currently interested in. Or sometimes she'll just take us for walks around the house with no apparent destination. I think she just likes asserting her perceived (well ok, at least some of that perception is accurate) control over us. Another newish trick is that she can do all of the accompanying motions to "Itsy Bitsy Spider" and she even says some of the lyrics while doing it! A sample:
Eesee beesee...raaaaain...dowwwwwn...suuun...eeseebeesee...all said in her most serious voice.

We have yet to start serious toilet training but we did buy her a new-fangled talking potty. She likes to play with all it's bells and whistles (and there are A LOT) and she even understands that she needs to lift the lid before sitting on the seat. She likes to go sit on it after she's pooped, but at least she seems to have the general idea. I'm planning to start training her once it's warmed up a little so that there will be less layers of clothes for her to have to struggle with.

Thank any-and-all-deities for the wonderful childproofing products available at Babies R Us! She's all about opening doors and drawers (while saying, "Opeeen...Shut!"), turning knobs and dials and pushing buttons. We've 'proofed the stove dials, all but one kitchen cabinet (which contains no toxic cleaners or easily breakable cookware), the entertainment center and the bathroom cupboard. Sadly, there are still many things that she attempts to get into or play with that have no such protective shields and so like the most parent's of toddlers, I spend the majority of my day following her around saying: No, no Sylvie...don't touch!...leave the kitty's tail alone...etc.

The cutest/scariest new development? Interest in boys. We had a couple of little male friends come play recently and Sylvie suddenly morphed into this super giggly, huggy girl. When her friend R came over, she was at first wary, as was he, but after about 10 minutes or so they were all over each other! Hugging, wrestling, tickling, even pushing each other around on a little car. Sylvie interacts a little with best pal S, but nothing like this! then when new friend P came for a playdate, she was instantly hugging on him which seemed to cause him some distress at first. Luckily, he warmed up to her and on subsequent playdates has hugs her, offers her snacks and even holds her hand. In fact, when P's mom K drove us all to the Science Museum (where we met up with M, S, C and S), Sylvie and P held hands in the car most of the way there and back. How cute is that?