Sesame Place

YEP, I did it. Sesame Place alone with my 2.5 year old.

 

 

We got there on a Tuesday morning about an hour before the park opened, this was our first and second Good idea. The parking lot was empty and there was no line to purchase tickets.*

*We went to the guest services ticket counter, all the way to the right near the restrooms outside the enterance. Here they met Max and were more than happy to give him a disabilty ticket (50% off) as we didn't know how much of the park he would be able to enjoy or how long we would be able to tolerate the crowds. Based on this I felt ZERO guilt, this is why they made the disabilty ticket.

 He started out in pretty good spirts.

Upon entering we were guided to the Welcome Center where we met some lovely families with various Dx and, wait for it...of course a beautiful little 4-year-old girl with Ds!

And we were given an orange accessability wrist band to gain first access to rides.

Don't get me wrong, I don't believe in abusing the Disablity Pass to randomly cut lines that we can handle, but honestly we are so grateful this Pass exists. This way we got to enter each ride first to see if he could handle it, then exit swiftly when we realized it was too much. Chaos avoided and it made for a pretty good day. And I was happy to see how understanding the other parents were.

He wasn't able to handle any rides this time around, and the food here really sucked but...




He met Cookie Monster. Big furry hit.

We also had a blast in Ernie's Bed Bounce (they made me go in with him!) I only wish I had a pic of that.


And, if in doubt put Max in water.

 (Seriously, bring swim suits even if you think you won't need them!)

Overall, the trip was pretty fun with some tips:

1. Disability Ticket and Wrist Band =  Sanity

2. Getting there mid week and an hour before the park opened gave us time to acclimate before the crowds got big.

3. Found a "quiet place" for emotional cool downs, and at 1pm went back to the car to see if we could regroup. We couldn't.

4. Packed snacks and water, which we consumed within 1 hour of being in the park when no resturants were open yet.

5. If they tell you your kid can only play in Earnies Bed Bounce if you go in too...DO IT! It was one of the highlights of our day!

What we'd do differently:

1. Beeline for the climbing, physically active, and water activites first. My guess is that he'd be able to handle some rides if he was able to expend some of that toddler energy first!

2. Pack/bring ALL food (not just snacks) and MORE WATER.
3. Next time get a stranger to take a pic of this single mama WITH her son for once, whoops!
4. Not pay for preferred parking. If you get there early you're not that much further with regular parking.
5. Attempt a "show."
6. Bring my own bathing suit, he liked the water park much more than the regular park.

Lesson 1

When things get rough, sometimes all you need is a change of perspective....

Humph! This isn't working....

Try this...

That's right...

ah, it seems so clear now....

Feel Better? Good!

Really? It's 2011... wtf British Airways!

British Airways turns girl away because she has Down's syndrome: Alice, 12, barred from Gatwick-Glasgow flight

Nutrition tidbits-Pt 1: Poop

So, Max and I do a lot of research on Nutrition and I've received many requests lately for our info. Well, there's a lot of it, so I'm going to do it in installments.

Our first stop is Poop...something that us mommas obsess about more than usual.


**Technical crap: I've learned, our kid's constipation isn't always purely "constipation" (hard and dry stool).
It can also be slow bowel mobility or insufficient peristalsis due to the Hypotonia. There's also a ton of other theories out there like low amounts of serotonin etc. Also, serious disorders such as Hirschprung’s disease that should be ruled out if the constipation seems severe and unrelenting.)

FIRST STOP: Miralax
Everyone hearts Miralax. In saying this I do not work for, receive a kickback from or am medically endorsing the stuff...I'm just saying it WORKS!  We started at 6 months with a 1/2 teaspoon, and upped it to a full teaspoon when he was particularly stopped up or when he got a bit bigger/older (9/10 months). It appears to work best when used daily at the same time without missing a dose, in a fruit as it makes a cereal's consistency really gross. Also, it doesn't seem to work on already existing constipation as I believe it affects the way the poop actually forms. So if your kid already has cement in there, you have to clear the way before the healthy stuff can get through.
My only complaint is that it is a man made medicine/chemical and our kids get enough of that stuff in their lifetime, so I was on the hunt for something more natural once we got some larger heath issues under control.  

Next: Probiotics
Meh, I tried Baby Biotic from Nutrivene. I believe every kid is different and it may really work for some, but unfortunately it didn't work for us so we had to move on to another option.

Next, Next: Flax Seed Oil
So far, so good. Day 4 and man my kid is poopin.  This is recommended by many docs as well as my beloved Dr. Sears so I was willing to give it a shot. It makes his food a bit greasy and chills it down a bit so I have to remember to add it early, but so far he's good with 1 tsp twice daily and I have yet to see any adverse affects.

Last Stop: Goat Milk
Holy Crap. No really! So this is where we stop, because this kid is good to go with a daily couple bottles of Goat Milk instead of Toddler Formula or Cow's Milk. We're never going back, he's been a perfect pooper now for 6 months without fail!!!!

Atlantoaxial Instability X-Ray today...

Today Max is headed to the radiologist for a cervical spine

x-ray to rule out Atlantoaxial Instability.

Bean was a very good sport.

What is Atlantoaxial Instability (AAI)?
Atlantoaxial instability (AAI) is characterized by excessive movement at the junction between the atlas (C1) and axis (C2) as a result of either a bony or ligamentous abnormality. (this occurs in which occurs in approximately 15% of youth with DS)
When the distance on X-ray between the 1st vertebra 2nd vertebra is more than 4.5 millimeters (mm), restriction on sports is advised.
Why do we care?
Well, when the child is involved in sports (Special Olympics)or an activity that may result in an injury (physical therapy)...the slipped or dislocated vertebra may injure the spinal cord. Max has torticollis, and needs to do some neck stretching exercises to counteract this tilt.


What did we find out?
Well after all the medical professionals involved, no one suggested that on a baby these bones are still cartilaginous so we won't get accurate results until he is at least 2 years of age. 

He will need an additional examination/x-ray to participate in the Special Olympics when he's older.

But no abnormalities were observed...so the roughhousing with Bean will continue.

8th Month Tricks!

A little bit behind but Max turned 8 months when we were in Lancaster PA.

Big Tricks:

• Rolling like a fiend to get across a room & get a toy
• Sitting well propped and beginning to sit for a minute or so independently while playing with toys or having his hands pulled to mouth or midline.
• Dada, Duck (during bathtime with rubber ducks only), and beginning to enunciate "B" after several weeks of speech therapy working on mouth closure.
• Beginning to understand "up" and lifting arms to be picked up when prompted.
• Laugh coming easier and more often.
• Appears to be hearing fairly well, responding to a variety of noises & name (clicking tounge)
• Beginning to "rock" on hands and knees whenever placed on playmat.
• Pincer grip pretty good, holding 2 objects and knocking together.
• some immitation with mouth and hand actions.
• Nursing very well.
• Hanging in Big person tub.
• Trying mushed up table foods off mama's plate & sips from open cup.

Ear Tubes!