Thursday, November 8, 2012

It's Been Awhile

Wooofta.  It’s so hard to find the time to post! So MUCH is going on.  Where to begin. . . I guess we should start with Chloe, since believe it or not, she’s the most “stable” one right now.  She was prescribed glasses a few weeks ago and that’s kinda of a joke, because she cries if she even sees you holding them in her hand.  (Writing that reminded me I needed to go try to put them on her. . . which I did and she DIDN’T cry and even put them on herself and played with them on for a WHOLE MINUTE!  Wow.)  I think we’re going to try some different styles, because the plastic ones with the strap are NOT doing it for her and quite frankly, the strap is worthless because if anything, it just annoys her and doesn’t do anything to keep them on when she wants them off!  They also sit right against her eye lashes and that seems uncomfortable.  So we’re going to head back to the optical center and try some different frames.  I know people talk about Specs 4 Us.  ANY glasses feedback would be welcomed.  UPDATE: we found out she IS wearing them fairly consistently at school.  But the teachers liked the idea of glasses without an annoying strap. ;)

Chloe’s got her PPT today.  She had a speech eval done outside of school and was diagnosed with dysarthria of speech as well as a secondary diagnosis of Childhood Apraxia of Speech.  We’ll see what if anything the school will do with her.  I know they’ve already made some adjustments, but today will make it all official.  We shall see.  UPDATE:  So they’ve increased her speech dramatically – basically 2.5 hours delivered by the speech pathologist and an additional 2 hours delivered by a para.  That’s a LOT of therapy, and pull-out so we’re increasing her to full days.  This is what I wanted, but once it became official I got that “my-girl-is-growing-up” pang.  FULL DAYS.  Hope I can handle it. LOL  We felt very good about the PPT.  In addition, they will be doing a bunch of standardized assessments as well as observations to get a good baseline of Chloe.  That was one of our major requests.  So we basically got everything we had hoped for.  We feel so lucky to have a team so dedicated to Chloe and her best interests!
Sadie with her newly pierced ears!

Sadie, the 7 year old, has been having hives for a month now.  They started at the end of an amoxicillin treatment, but just don’t seem to go away.  We’re giving it to the end of this week before we investigate further.  She’s pretty much okay as long as she’s on Claritin, but off she breaks out in these terribly itchy hives.  But at least they are managed on Claritin, so she’s not suffering!  Other than that, Sadie is doing well.  She was selected to be a peer star to help other kids at school.  She just LOVES school and learning and has been a generally happy kid lately. (knock on wood).  She just finished soccer, which she loved.  It was nice for her to have an activity all her own (as opposed to just following Xander around to hockey!)

And then there’s Xander.  Without getting into too many details, as he is 11 and I don’t want to embarrass him!, but he’s been really struggling lately.  HATES school and is really having a hard time there.  He’s also having some health issues – achy muscles, fatigue and low stamina.  It’s been going on for MONTHS.  So we’ve started the thorough investigation to see if there is some underlying illness/disease/syndrome going on.  He’s been to a rheumatologist at Yale and had 11 viles of blood drawn.  The examination itself was good and in fact he was found to have extra loose joints which could be the cause of the aching.  We also saw the eye doc yesterday and he has the eye sight of “fighter pilot”!  (that’s a good thing).  They were checking for inflammation of the eye that could happen with some autoimmune disease, and he checked out fine.  So, so far so good.  I just hope we find some answers.  We have to wait 16 days from the time of the blood draw for results.  In the meantime I’m going to investigate Sensory Processing Disorder because he demonstrated characteristics of that when he was younger and that may really be affecting his school work.  I also think he needs a sleep study as his sleep is terrible.  Hopefully eventually we’ll get to the bottom of what ails him!
Xander wearing reading glasses while his eyes were dilated.

On top of all this, Stacey and I are busy working.  I feel like I’ve got a lot of balls in the air.  Just trying to keep them from dropping!  Oh, and for those of you wondering how we faired with Hurricane Sandy, we feel VERY lucky.  It wasn’t without drama, involving a near middle-of-the-storm evacuation with a sleeping Chloe, dry-heaving Sadie (she was terrified) and anxious Xander. . . we lost some roof tiles, a large limb fell on and broke a bench, and we had our outdoor glass table shatter all over our lawn.  We also lost power for about 24 hours, but a newly purchased generator kept us from losing all our food.  So all-in-all we are grateful for our own personal outcome.  Our hearts and thoughts are with those who were not so lucky.  And as if that weren’t enough, we had a fluke Nor’easter that dropped quite a bit more snow then they had predicted!  But we’re New Englanders and we’ll take it as it comes. . .
The Simpsons came for a visit this Halloween

Last but not least, let’s not forget Miles.  (yes, Miles the dog, ha ha).  He’s been plagued with allergies, poor thing, so we’re trying to take care of him too.  I swear, never a dull moment around her. 
Sadie and Miles!

On a VERY positive note, Stacey’s mom, AKA Grandma Linda, is here visiting for the next 11 days.  We’re so excited to have her here with us!  We don’t get to see her near enough, so it’s so special when she comes.  Hopefully the weather will remain quiet from here on out!
Happy to have Grandma Linda here!!!!

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