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!

3 comments:

RiverGma said...

She is doing GREAT! Her Great Aunt Ellen was asking about her today so I am going to e-mail her that she should look at this up date !
Let me know when Sylvie's new 'wheels' arrive ;o) Kisses and hugs

Chloe said...

Not "ridiculous," she's saying "Ridikkulus" to try to get rid of a boggart! She'll be getting her Hogwarts letter in 8 years or so. Watch for low-flying owls.

soothedbyrainfall said...

Wouldn't that be COOL?! I hope she'll be a Ravenclaw like her mommy ;-)