Saturday, October 3, 2015

Giddy Up

We found out pretty early that Grace loves horses.

Not the real kind.

The ones that go up and down and around and around.


Some of our easiest pictures to get of Grace are when she's riding the merry-go-round, because she's always smiling.


The combination of the motion, the music, and being surrounded by family is the perfect recipe for Grace's joy sensors in her brain.


Or maybe it was just horses all along.

This year, we had a couple of opportunities to get Grace aboard a real pony, and we think the smiles are even bigger!


She loved the bumpity bumps, and the clippity clops....



...and we like to believe she could feel the connection with another living thing.

We have a friend who owns a couple of full-size horses who keeps egging us on to get out to her farm.   I think we'll take her up on her offer soon.

Yippee Ki Yay!

Friday, October 2, 2015

A Yawner

Thankfully, the past year has been full of good health in Graceland.

Our favorite four-year-old continues to grow, which was more than evident when she tried on her Fall clothes from last year.   (Sadie, hope you like last year's fashion next year.)

One of the recommended tests for a toddler with Down Syndrome is a sleep study to ensure that your child is getting a good amount (and the right quality) of sleep each night.   If sleep apnea is detected, it could mean having tonsils and/or adenoids removed, or requiring Grace to wear a sleep mask each night to give her a constant flow of oxygen.

Grace went into the overnight study just beaming.   It started at 8:30pm, which might have been the latest ever she had been allowed to stay up in her lifetime.   All the nighttime sounds and lights of the city were all hers to take in.

When we got to the hospital, Grace was already in love with her room: A) a grown-up bed with only short barriers on each side; B) no sister singing while she's trying to sleep; C) all the fixins from home, including favorite PJ's and bedtime snuggle buddies.

This was going to be a great night!


And more sass....


....before the....


...the electrodes were attached.   A lot of them!

Grace is very sensitive about her hair.   Even some hair washings can draw a tear or two.  Especially if she's tired.  And she was tired.  It took awhile to get everything hooked up so by the time it was light's out, it was about three hours past her bedtime.

But Grace eventually settled down, and fell asleep.  There were a few times during the night where the technician had to come in and check a wire or two, and Grace stirred a little.   I have no idea how they measure a typical night's sleep this way.

And then, at 5:30 in the morning, without any warning, LIGHTS ON..."all right, time to wake up"!  And then all the electrodes have to come off, including the one's glued to her head.  But a little music and at least a few hours of sleep helped keep the Gracer's mood in check.

yes, that's a wad of glue still stuck in her hair
The most exciting thing about the night was the results we got back a couple of weeks later.   We got the paperwork in the mail a few days before the follow-up appointment.  It said her sleep efficient was in the mid-90% range.  

The doctor said all looked great (her quote - "you must be thrilled"), and even though we will schedule another sleep study in a few years just to have on record, we can rest assured each night that Grace is resting.

Thursday, October 1, 2015

So How's Your Year Been?

Yes, we abandoned our post.

We didn't even say goodbye.

But we couldn't let Graceland fade away just yet, so we're back for another blast during Down Syndrome Awareness Month.  Or, as some are campaigning, Down Syndrome Acceptance Month.

We have lots to catch you up on.  We hope you'll tune in.


Friday, October 31, 2014

21 (we tried!) for 21: Happy Halloween

If we've demonstrated anything on this blog, it's that our gal Gracer is one tough cookie.  


And as any parent of toddlers knows,  when a cookie is present….


The Cookie Monster is not far behind!  It wasn't long before the chase was on.


Once they got to the actual business of Halloween, they were thrilled to discover that there was sugar involved.


 And being outside after dark.


Sure, we may have only made it to two houses before the meltdowns started, but that's just the way the cookie crumbles.


Friday, October 24, 2014

31 For 21: Patching Things Up

Grace has a new accessory, just in time for Halloween.


We went to the ophthalmologist today for a follow-up to Grace's surgery last May.  Grace had eye surgery to correct her nystagmus, which caused her eyes to shake in certain head positions.   The theory behind the surgery is to disconnect the eye muscle and reattached them so the brain is tricked into a new null point.   In other words, instead of correcting the nystagmus by tilting her head to a position that her eyes are steady, Grace should be able to look straight ahead with no problems while some of the head tilt positions would cause the eye shake.

Jenni and I have noticed a few things since the surgery.  Yes, it seems like her nystagmus is less severe but Grace is now tilting her head the other way.   We were concerned the surgeon might have "overcorrected" the issue.  Also, Grace's right eye will now wander up and out on occasion, especially when she's tired or laying down.

The ophthalmologist believes Grace's right eye muscle was always weaker than her left and, maybe the surgery magnified that, maybe not.  She says that could also explain Grace's new head posturing, which allows Grace's left eye to do all the heavy lifting.   So the doctor felt it best to put a patch over Grace's left eye for an hour a day, everyday, for the next three month, to strengthen that right eye muscle.  

We had no idea how Grace would do with wearing a patch and of course, we'll go easy on her for the first few days, putting her in front of the TV, the iPad or a book, which will keep her mind off the patch.

Of course, as soon as we put the patch on today, not only did Grace tolerate it, but someone else wanted a piece of the action.


We're hopeful that the patch will get that darn right eye to stop misbehaving.   And of course, we're excited about any possible solutions that don't involve surgery.


Thursday, October 23, 2014

31 for 21: Preschool Admissions in the Big Apple

Grace officially started preschool last month, but the process to get her there started last September.  


When Grace turned 3, she entered the world of preschool and IEPs.  And here in NYC, it is not too far off from the college admissions process.

First, we had to qualify for special education and therapies. In NYC, this is done via a two-hour parent interview, a one-hour speech/feeding evaluation, a one-hour physical therapy and occupational therapy evaluation, a one-hour psychological evaluation and a school observation.  After all these tests were done by people who don't know Grace, they were written up and submitted to the Department of Education.  We then had a meeting with an administrator at the Department of Ed who read the reports, asked us questions and said "here is what your child is entitled to".  The hope is that this administrator's idea of what your child needs matches yours and the school of your choice, or, at least, the school that chooses your child.

Our meeting was with a notorious administrator who I had heard about at prep meetings.  She was known for being tough and marching to her own drum and not hearing parents.  We must have caught her on a good day, or perhaps a few pics of The Gracer melted her heart, but she was quite reasonable, generous and helpful.  She laid out Grace's first IEP, and it's a pretty good one.  We didn't get everything we wanted but we got more than we anticipated.   So we are grateful for the toughie.


Outside of the Department of Education process, there are the schools.  We went on 5 parent tours.  These were 1 1/2 - 2 hours long, usually in the middle of the workday, only for parents.   We learned about handwriting methods, and singing/reading methods, and social methods, and how they are all superior and the best thing for our child.   Oh, and how they only had a few spots for the upcoming school year.  

After the tours were completed, we had to decide which schools we wanted to apply to.  Which was silly really, because there are only 6 schools in all of Manhattan that easily accept a child with "multiple disabilities".  If your child has autism, or a language problem, there are many schools to choose from, but if your child has trouble negotiating stairs ANDs nouns, your options are limited.

So we completed the applications, and we waited to be invited for a "play intake" which is in reality, an audition.  So if Grace didn't get a nap that day, or the playdate was during the nap, or she was sick and not completely herself, she might not get in.  And if Grace was Grace, and shining her heart as brightly as we know it can shine, she might not get in.    All of our therapists and teachers warned us, "cast your net wide".  "don't get your hopes up" etc.


And part of the time, we thought, this is dumb:  It's PRESCHOOL.  She will be tracing her hand and finger painting and singing songs and making friends.  But then we read that the way that the brain processes things throughout life is greatly influenced by the experiences and guidance done during years 1-5.  So we cared.  And we hoped.  And we cast the net as wide as 5 schools.

And leave it to Grace, she got into a very well-respected preschool.  They are still getting to know our gal, but we know that she will blow them away!


More on her first days in a future post.  For now, we need to catch up on getting Sadie into preschool - apparently we are already 2 years behind!

Wednesday, October 22, 2014

31 For 21: Califamily

The girls are finally settling back into East coast time, after their first visit to California about a week ago.

Grace and Sadie were happy to get a lot of Grandma time, filled with song, stories and smiles.



Grandpa unfortunately was in the hospital for most of the visit with pneumonia, but he's feeling much better now.

We took advantage of the fantastic weather to spend a lot of time outside.

Who can't resist being barefoot in the grass and chasing bubbles blown from your cousin Kacia?


And while we're looking at the family tree, how cute is Sienna, Grace and Sadie's first cousin, once removed?


The girls have five cousins on my side.  Here are four of them:  Benjamin, Kacia, Ryan and Brielle.   


Kacia and Brielle visited us last July and Grace is still talking about them.

We're so happy we made the trip out west and hope to make it a more frequent event.   Love all our California family!