Friday, November 30, 2012

Thanksgiving Post


Well, it’s sort of a Thanksgiving post.  I’m not going to go through all the things I’m thankful for because that list would be endless.  Instead I’ll just update on the goings on in the ol’ household. 

As always I’m impressed by Chloe’s strength.  Although she is currently lying on the couch with a stomach bug, I know she will fight this off like any other healthy kid would (in such sharp contrast to her first few years!)  I can’t say it enough, I am just amazed at how far she’s come!  UPDATE: she was up and off the couch in a matter of hours as if NOTHING had happened!!!!)

Chloe was recently “diagnosed” with dysarthria  of speech (basically low muscle tone of her speech mechanisms, including her tongue and face) and secondary apraxia of speech which is a motor planning problem.  Because of her need for intensive speech therapies, her school has increased her to full days.  It’s surprisingly hard to send my “baby” off to full days, particularly since she’s having a little tough time with the adjustment, but I think once she settles in, it will be the right choice.

The glasses continue to be a bit of a challenge, although she is wearing them for longer periods of time.  I still think I want to get her a different pair.  .  . just have to figure out how and when to get that accomplished.  In due time ;)

And then there’s Sadie.  Still having occasional hives.  Saw the doc and he sent us for blood work, which she was VERY BRAVE for, but we’re still waiting for the results.  Hopefully soon.  It’s been awhile, so obviously they’re all negative, because no news is good news when it comes to lab work.  Doc said we will likely never know what’s causing them and it could take months for them to go away, but they should. . . eventually.  UPDATE: all labs were normal J

As for Xander, his 11 viles of blood work basically came back all good except for one test for his thyroid, which MIGHT indicate that he has hypothyroidism.  Now another test came back normal, contradicting the other test, and indicating the need for further investigation (and yes, you got it, more blood work).  I’m again waiting to talk to the pedi before telling Xander the results.  I have my fingers and toes crossed that this is our answer and that a simple thyroid replacement hormone pill would help “fix” him.  It DOES really fit his symptoms, so I’m hoping there might be a light at the end of the tunnel. 

And as if things weren’t interesting enough, our poor poocher is itchy all over and just can’t seem to get relief.  We’ve been trying non-soap baths, and Zyrtec, but I just don’t think he’s getting enough relief.  I think it might be time to get his thyroid checked too (he’s overweight, always cold, lies around and isn’t as active as his breed typically is and he itches).  Can you imagine if he’s got an underactive thyroid too!!! LOL  We seem like a big mess, don’t we.

Stacey and I are hangin’ strong.  I’m going to get my thyroid checked soon too because I’ve had symptoms again.  Hoping that’s my quick easy answer.  Stacey, KNOCK ON WOOD, has been healthy!  And mom is doing well too – helping to keep us all held together!

so, in end, Thanksgiving is a time when we realized despite these little hiccups in our lives we truly have sooooo much to be thankful for!  And I truly mean sooooooo much!  We were a little sad without our old traditional large extended family thanksgiving dinner, but made the most of our “new normal” with just ourselves.  The kids helped cook and we just enjoyed a day of our family.  Sometimes it’s important to do that.  I hope you and yours had a nice holiday and find yourselves with some sort of peace.  As the craziness of the season takes over, let’s all not forget all those wonderful things we DO have to be thankful for!

Peace out.

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!!!!

Sunday, October 14, 2012

Back on the Train

I don’t know what changed my emotional direction, but I’m back on the Down syndrome train!  I knew as with all things “this too shall pass” and that it was just a phase, but when you’re in the midst of it, you wonder how long it’ll be before you’re back to celebrating the joys and even embracing the challenges.  I’m back to that point.  Phew!  As normal as I know it is to feel frustration and disappointment at times, that doesn’t make it any easier.  For one, no one likes feeling that way in general, but then to feel that way about your own child, leaves you with this overwhelming guilt.  But I’m in a good place again and feeling good about my little amazing wonder, and watching her grow and develop and reach those oh-so-hard-to-reach milestones.  I’m back to celebrating. 

I had an interesting interaction recently.  I sat and talked with a woman who wanted to know how “bad” was Chloe’s Down syndrome (i.e., how high or low functioning she is).  She also talked to me about her “retarded Uncle, not Down syndrome retarded, but regular retarded” (yes, those were her exact words).  I know I probably should have used that as a teaching moment about political correct terminology, but I instead just focused on trying to educate her on how wonderfully lucky and blessed we were to have such a wonderful child.  But I also made it clear she’s not some stereotype of what people think Down syndrome is.  She’s an individual with individual likes, desires, dislikes. . . she’s happy and charming, but also a real live pain in the ass.  She brightens our LIVES, but also challenges us like any other child.  As EVERYONE who has a child with Ds knows, she’s more alike than different.  So I may not have “schooled” her on the correct terminology, but I think I did educate her a little on life with a very special girl who just happens to have Down syndrome.
 
As always, thanks for reading and sharing with us as we navigate our way through this amazing journey!

Saturday, September 15, 2012

A Long Time Coming


This post, that is, has been a LONG TIME coming.  I originally wrote it back in July, but have had a difficult time posting it.  Not only because I don’t know how it’ll be received, but also because it’s a hard thing for me to admit to myself and deal with. . . accept, and move on.  But as I’ve sat on this post for months now, I finally think (THINK) now is the time.  Please know too, that part of my struggle with posting this lies in the perceptions that we want to convey to expectant and new parents who are truly blessed with a child with Down syndrome.  I don’t want to deter ANYONE from making that choice for life or from feeling they can’t do it, because I believe in my heart EVERYONE has the capability to love and raise a child with special needs if they just allow themselves to be open to a new and (mostly) wonderful world.  But at risk of, well, pissing some people off, I am posting this because 1) it is honest and I feel that is important for my readers and Chloe’s followers and 2) I think it’s OK to say it ISN’T wonderful ALL THE TIME.  There are struggles.  We would all be lying if we didn’t agree to that.  But in our experience, the lows can be real low, but the highs are what we LIVE FOR.  Because they’re amazing (the HIGHS).  Watching Chloe accomplish what should be the simplest task. . . hearing her laugh at her sister and brother. . . hearing her say her name for the first time, or Mama for that matter. . . seeing her touch the hearts of people who didn’t think they themselves could be touched. . . I could go on and on about the HIGHS and fortunately, the lows are much less frequent.  But they ARE present and this is one of those times, still sprinkled in with the highs, therefore preserving my sanity!   Anyway, here it goes:

TABOO - originally written July 28, 2012

No, not the game, but what I’m going to say.  I don’t ALWAYS LOVE Down syndrome.  To tell you the truth, this has come as a surprise to me.  I THOUGHT I did.  I mean, don’t get me wrong, I embrace it and LOVE LOVE LOVE Chloe for who she is, but I guess as she gets a little older (but doesn’t seem any older in some behaviors) I start to get frustrated.  And I guess instead of getting frustrated at Chloe, I get frustrated at Down syndrome.  I mean I can’t NOT like her. . . or maybe I can.  . . but instead of that, I don’t like the Ds.  Does this make sense?  Anyone???? 


video

Maybe I should be more specific.  Lately (HA! “lately” means for over a year now!) Chloe has been climbing on EVERYTHING.  And the older she gets the harder it gets, because she doesn’t stop doing the behavior, like “typical” kids would, she just gets better at it.  Now she can push the chairs where she wants them or reach things she couldn’t reach before and she’s smarter!  Outsmarting me most of the time.  I don’t know why I feel the need to keep saying it, but I LOVE Chloe (I mean, of course I do!!!!  She’s my child and just because she has a disability doesn’t mean I love her any less.  In fact if you asked my other kids they’d swear I love her MORE, which obviously isn’t true either. ) and it’s hard to admit that this is HARD.  It’s hard having a kid with disabilities.  I guess I’m afraid to say that to scare off anyone with a sweet baby or someone who doesn’t have a child with a disability because one thing I try to convey MOST of the time is the extreme joy and love that we do experience.  Even when things are hard, it’s usually (USUALLY) still filled with this sort of magic that only people who KNOW someone with a disability can understand.  But I also have to tell the truth and it isn’t ALWAYS magic.  It isn’t always laughter and smiles and triumph. 

The chunk of wood Chloe bit off the deck
Chloe's artwork
Notice the toothbrush on the toilet!
I want her to STOP trying to do somersaults on the porch table.  I want her to STOP throwing ALL her meals on the floor so that at almost 4 years old I’m to the point of having to hand-feed her again.  I want her to STOP getting things off the counter just so she can dump them on the floor.  I want her to STOP writing on every surface she knows she’s not supposed to every time she gets anywhere near a writing utensil (I swear it’s like she has Jedi powers and can mind-meld pens and pencils off the counter and into her hot little hands)!  I want her to STOP getting into EVERYTHING – the toilets, the dog water bowl, you name it. . .  I want her to STOP figuring out how to escape from the house so that I have to have her in my sights at all times or I have to panic wondering where she’s off to.  I just want her to STOP doing these things.  NOT stop being Chloe.  But then there’s always that question I ask myself, if she wasn’t doing all those things, would she BE CHLOE?  Would she still have all those other wonderful characteristics that make her so incredibly special that people follow her story and her life and see the magic in her without even meeting her?  How can I possibly HATE or even DISLIKE Down syndrome without feeling the same way about Chloe?  I mean I know SHE’S not “Down syndrome”, but it is so much a part of her.  It’s in every gene for goodness sakes.  And then, I spend the day at my favorite event of the entire year, the CT Down syndrome picnic, an event that obviously encompasses everything Down syndrome is about – a celebration of ALL its joys and wonders.  And most importantly the “family” that we feel so lucky to be a part of. 
I don’t know where this is headed.  I guess I just needed to get off my chest that sometimes I don’t love Down syndrome.  I always LOVE Chloe, obviously and I love the life we are getting to experience with her.  I guess it’s like I say as kids get older the hard gets harder, but the easy gets easier.  Having Chloe I’ve found, and I am only speaking for myself here, that having a child with a disability the hard is HARD, but the rewards are AMAZING.  And I couldn’t do the HARD without all the support of Chloe’s Crew. . . our “village” that keeps me going.

Monday, August 13, 2012

The Birthday Post



What can I say on this special day to bring true meaning to it?  How can I express the joy of being able to celebrate this and each birthday with Chloe?  It was a rough start.  Times we doubted her future.  Now WHAT it would be, but THAT it would be.  So when each birthday comes I find myself highly emotional.  Almost giddy at times, at the sheer thought of her presence.  And as she reaches each annual milestone, not only is she a year older and further along, but she’s a year STRONGER.  And this girl has more zest than anyone I know.  And talk about personality!  I think anyone who is blessed to know someone with Down syndrome knows a little something about their strong-willed vibrant personalities.  (Clearly NOT to say people with Ds are all alike, quite the contrary, but they do have some very special traits that they share, I just happen to think their sparkling personalities is one of them!)  I don’t want to go on and on about how great I think Chloe is. . . obviously, I’m her mom!  And those of you that follow this blog most likely agree and love her too.  I just wanted to give a little insight into the wonders of this day that rolls around once a year.  A reminder, if you will, not only of what she has overcome, but what she holds in her grasps for the future.  I have NO DOUBT whoever she becomes I will be amazed time and time again along the way and I HOPE you’ll continue to enjoy this journey with us.

Happy 4th Birthday Ms. Chloe!
Love, your family and friends!

Thursday, July 5, 2012

A Wish Come True


Chloe was granted a VERY special wish.  A playscape to call her own that she could use independently and that would grow with her as she grows.  Thanks to the wonderful and generous contribution through her Nana’s employers’ “Self Improvement Fund” at LeClairRyan and the obviously thoughtful gift from Chloe’s Nana to use her fund in this way, Chloe and her siblings now have an adaptable playscape.  They LOVE it so much and can’t wait to share it with their friends.  Enjoy our journey in pictures below:
Step 1: Reading directions!!!!! (And we're talking books and books of directions!)
The BEFORE shot
The Boxes
Ready for her new playscape!
Keeping busy while she waits. . .
Ready to build!
Day 1
Trying out the toddler swing.
Trying out the slide
I think she likes it!!!!
ALL DONE!!!!  Thanks to the help from Justin and Greg and lots of little helpers!

Monday, June 18, 2012

Father's Day

First to my husband, Stacey.  I hope you got to enjoy your special day.  Your family LOVES YOU VERY MUCH!!!!!!
Xander, Sadie and Chloe's gift to daddy.

Next, to my dad, I hope you have a wonderful father's day.  I love you very much.
Me and my dad on Cinco de Mayo

And Father's Day can't pass without thoughts of love and loss, for my step-father Sam and father-in-law Al. Both men played an important role in my life and my children's lives and I miss them dearly.
Bah-Pah with Sadie.

My step-dad Sam, AKA "Bah-Pah" by my kids

An old pic, but he was just so handsome!  We miss you Grandpa Al!

Lots of love in my heart and head for these men. 

Before we finish thought you might enjoy a little montage from our day at the RI Air Show yesterday.  Don't worry it's short and sweet. :)



Friday, June 15, 2012

Everyone Should Have One!!!!

So you’ve probably assumed by the title that I’m talking about a child with Down syndrome and although I DO feel we are BLESSED to have Chloe, that’s not what I’m talking about today.  Actually, this post has little to do with Down syndrome or even Chloe, but rather it’s about ME this time. 

I just had THE MOST wonderfully relaxing experience and I wanted to share it with everyone.  Back in May for my birthday my mother gave me a gift certificate for either a massage or CranioSacral Therapy.  Since I have fibromyalgia as much as I LOVE massages they tend to feel GREAT at the time, but can leave me feeling sore or achy.  And the woman Terri Laggis at Wisteria Healing Arts Center in Madison had thought CranioSacral Therapy might be the way to go for me.  Boy was she ever right!!!!  It was THE MOST relaxing thing I’ve ever had done.  I suffer from depression and anxiety too and this therapy brought my body to a level of relaxation that I haven’t felt in a long time. 

So why am I writing about this?  Because many of you out there may have never heard of it, CranioSacral Therapy, and I wanted to share in a good thing.  So if you’re local I HIGHLY recommend Terri at Wisteria but if you’re not, look into it.  It’s well worth the money and effort.  I plan on going back again. . . and again. . . and again.

It’s a good day.

Okay, so I couldn’t end a post without a picture of Chloe.  Enjoy.

Sunday, June 10, 2012

Rainbows


There’s something about a rainbow that gives me hope.  Last night while it was raining, yet the sun was shining off in the distance, we saw a beautiful full-sky rainbow.  Obviously the photograph doesn’t capture its natural beauty or its magic, but I wanted to give you an idea of what we saw.

Things around here have been pretty good, except for a very sick mother-in-law/grandma out in Montana.  But looking through the rain to the sun and out to the beautiful rainbow gives me strength and hope to KNOW she’s going to be okay.  A little time, LOTS of love and caring, and good positive mojo and prayer should get her through this tough time.  Something about that rainbow gives me hope. . .

Chloe had her 6-month well-visit last week.  Talk about magical!  Watching her strut into the doctor’s office with her monkey harness back-pack on with a sense of confidence that is newly surfacing in her was like a gift.  Smiling, greeting everyone, approaching the toys as if she OWNED them (not in a possessive way, but in an I-know-just-what-to-do-with-this-stuff way).  Then the doc came out and she greeted him with a BIG hello and smile and bounded into his office ready to go.  “Play” she signed and said.  The next 45-minutes to an hour were spent watching her captivate our wonderful pediatrician who sat next to her on the little kiddie chair when he was invited with a pat on the chair and snuggled with her when she crawled up into his lap.  We all sat cross-legged on the floor and Chloe beamed at her ability to do so and be a part of the “group”.  We discussed all the wonderful progress she’s made and of course covered the medical basics.  It was an all around fantastic visit.

Sadie is busy with school and reading and writing stories and poems.  She recently wrote a poem/bookmark for me that I just love called "Loveable":
My mother is a loveable person.
She is a diamond,
Shiny as can be.
She tucks me in my bed.
I look at her when she tucks me in bed
And think
“You are so loveable”.

When she isn’t being sweet and fun-loving, she’s a difficult spoiled little middle child who HATES her mother!!!!  LOL The ups and downs of being 6!  She is looking forward to summer and camps and vacations and most of all a visit from cousin Macy for Camp Mason-Mann.

Xander, with his handsome new haircut, is busy breaking hearts.  After a very swollen groin lymph node from an infection on his leg, he is now healthy and also looking forward to summer vacation.  He’ll be enjoying a variety of camps as well as some days just hanging around at home.  Maine is always a big hit with him and he can’t wait for Macy to come (they’re doing a CSI-type camp together in the mornings). 

Stacey and I are doing well, minus our worries about Stacey’s mom.  We both feel healthy (knock on wood) and strong and aren’t the “hot messes” we were a few months ago.  Stacey has just finished up his spring 6-day-work schedule and is enjoying some time with the family mixed with lots of yard work.  As for me, I’m just enjoying my family and life and getting ready for the summer.  My job is going well and I feel comfortable with my current work/family balance.  We have THE BEST nanny in the world, so that makes it that much better. 
So please direct your prayers for us towards Stacey’s mom in hopes of a speedy recovery.  We of course love her very much and want her better soon!!!!  We look so forward to our visit with her and hope she is well enough in time to visit us in the fall.

**Since writing this Xander whacked his thumb playing drums and took a trip to the ER for an XRay (which was negative), started getting bullied at school and Grandma Linda was delayed from being released from the hospital, but we're still all in good spirits and hopeful for a speedy recovery for Linda and a quick resolution to Xander's bullying. 
Peace and love to all our friends and family!