First Family Vacation Part Two: The Other Stuff

I’m a big fan of staycations. You don’t need “a vacation from your vacation,” you get stuff done, and I just enjoy being home. I’m a homebody probably because I spend more time OUT of it than in.

We had a handful of appointments for Hannah and one for Tim. 

We went to Coney Island which was anti-climatic. For having such a bold personality, that Nora sure doesn’t want to attempt any rides besides the carousel - and not even an animal - or the small slow turtle ride. We did manage the sack slide again this year. At least she’s consistent? Thank goodness we only paid about $8 for her ride bracelet because we sure did not do a lot there. 

On Friday we went to Scene 75. The inside is just as bad as I imagined it; too bright, too flashy, too much. However - tucked back in the corner is a separate room full of inflatables for kids until 12 to bounce around in as well as a corralled area full of padded pieces for toddlers to climb all over - brilliant! 

We hung out for maybe an hour. One of the employees approached Hannah and I in the toddler area. She asked about Hannah’s eye patch and said “Some of my favorite people have Down syndrome.” She’d worked at a daycare and her favorite kids were those with Ds. It made me smile that she approached us and Hannah seemed to brighten her day : )

Saturday I ran 8 miles then Tim and I headed down to our friend’s lakehouse for an annual Adult Day - thanks Mom & Dad for coming down so Tim and I could enjoy a day with our friends, just lazing about! Sitting on a raft with an adult beverage is about as good as it gets these days! It was awesome!

Frands.

5am

I just have to document this because it makes me laugh. I’m on the left. 

To be clear - I do not like getting up at 5am. I just do it because I know it’s the only time I have. I never regret it.

First Family Vacation Part One: Indy

We took our first official family “vacation” this past week - only because our sitter was on vacation : ) I use the term loosely because it wasn’t relaxing or a very far destination : )

Day One:
We left Sunday afternoon - strategically at nap time - and headed to Indianapolis for two nights. We checked in and then headed back out to dinner to meet up with my college friends, Paul & Kara Mealy - whom I knew in college before they married! They have two sweet girls, Toshi is eight and Martha just turned six. 

We met at the Rusty Bucket near their neighborhood. It was a quick visit but a nice catch-up. Our girls had their own conversation going on which is always adorable. When we left, Kara texted me that Toshi hoped she went to college with Nora - how sweet after just a short time : D No, I did not get a photo and yes, I regret it. 

We stayed at Staybridge Suites - which I totally recommend for families with small children; we had a suite where the bathroom/sleeping space was separated from the living nook and full kitchen! Full fridge, stove, microwave, dishwasher, microwave and tons of dishes and cookware! 

Big Girl standing with support!

We took the girls swimming in the sub-par pool before putting them down for the night. Everyone slept well. Very comfy beds.

Mommy’s evening treat.

Day Two:
Staybridge Suites has a free breakfast - not too shabby. 

Monday we went to the Indy Zoo... it was one mile away and made the mistake of thinking three of us would be able to walk there. I went against my better judgement - I know my four year old. We ended up taking turns carrying Nora on our backs or shoulders. 

The zoo itself is very nice - they seem to not have nearly as many animals as we do and I felt it’s about half the size of Cincy Zoo. We sat down to look at a map and realized we’d seen everything [quickly] in about 1.5 hrs. 

I attempted to take Nora to a dolphin show but girlfriend doesn’t understand the concept of time and waiting, so we left before the show even started. She was also dead-set on getting cotton candy - a sweet she’s never had and was going to get her hands on. After we found some, it’s as if we didn’t need to see any more there.

This just plain made me sad.

Sassy Cotton

We ate lunch in the room to chill out and cool off. Hannah thankfully napped about 1 1/2 hrs while Tim took Nora down to the pool again. 

We went family friendly for dinner to Old Spaghetti Warehouse - ooooo! Pasta is always a safe bet with children. THIS time we took the extra umbrella stroller for the whiney four year old - worked perfect. 

Pre-Dinner “Sad Mall” ride

Classy.

Tim and I enjoyed their best beer - a Newcastle. Eh, I’ll take it. 

Got back to the hotel before bedtime and realized yet another perk of Staybridge Suites - Happy Hour on weeknights from 5:30-7:30! Hell yeah! Good range; cheap beer, craft beer, and a red, white and zin wine. Amazing. 

Day Three:
Made it to the Children’s Museum just before it opened - great place - huge! I think about four floors. I think Nora was on the low end of being able to enjoy it. She did like it. Tim and I thought it was cool. 

A great toddler space where Hannah could do her moves.

I would recommend bringing your own food for lunch because the Museum’s food is not good. Bleh. 

We left at the perfect time - around 1pm and the girls slept the entire way home! 

Two nights in a hotel room was enough and ready to get back home! 

Oh Hannah!

To start - I cannot [and can?] believe our nugget is about to turn TWO - what?! It seems I was just crying about the NICU, exclusive pumping and tube feeding!

I think I may have posted that we decided to stop her tube feedings the first week of July. She eats just fine - will eat most food - and is doing great. If you aren’t forced a load of pureed food in your stomach, you’d get hungry and eat, right? 

I was incredibly nervous with this experiment. I’m a rule follower. So this past month I’ve been a bit crazed making sure she’s getting as many calories as she can - especially since she’s even more active now [more about that later]. Butter, cheese, full fat yogurt, whole milk, you name it. 

As you all know, I think this whole thing is horse-hooey. If you’ve seen our family, we’re all long and lean. Just because Hannah has Ds does not mean she’ll be that different. And individuals with Ds swing towards being overweight so I am not about to get into bad habits that will stick. 

SO - yesterday was the big weigh-in. Last weigh-in was a two month gap and she gained nothing. Thank heavens she gained weight!! Not a lot, but enough to be satisfactory and no one chastised me for pulling the plug [Hey-Ohhh!] on the tube feedings. Hannah is 22lbs and 31.7". She averaged over 7g/gain a day which is close to what the team “wanted.”

So I am thrilled our peanut is close to getting off the tube. I’m more uncertain she’s getting enough fluids, but we force it on her a lot throughout the day. 

We see her GI specialist on Aug 31st, so I’ll be interested to see what he says. 

Biggie Girl sitting at the counter!

:: Hands in the air ::

Next, today Hannah had her eye follow-up. We’ve been patching for three long months. And well; over two hours a day which is minimum. 

Dr. Motley said to just keep going... sigh. For FOUR months. He doesn’t feel surgery is needed, but doesn’t see concern for Hannah’s left eye turning in. As if it’s just part of her far-sightedness. She *may* grow out of it? 

Blergh - it’s annoying but there are far worse things to deal with!

My preppy little cutie!

Finally - whoa Nelly, Hannah is itching to move. We’ve been off this week for “vacation” and the timing has been great - we’ve seen Hannah pulling to knees then stand, she’s attempting to start to stand and is crazily climbing the ottomans onto the couch/chair! 

We’ve even caught her actually crawling a bit on both knees instead of her unique scoot. 

I need to get a video of all this! If you have a typical kid, you just assume this will happen and wait for it. I am literally helping Hannah climb our staircase as physical therapy. I’m teaching our daughter all the “annoying” things so that she can reach her goals. It’s a new level of appreciation for those milestones!

I actually was afraid she wouldn’t be walking by preschool, but this past week has blown me away - get it Baby Girl and keep roaring!

I love how big the 2T clothes look on her : ) 

How People with Ds See Themselves:

I have SO much catching up to do - the past two weeks have been insane, so I’m just going to start with this amazing video from the UK. 

First, the preference in the UK is Down’s syndrome. The preference in the US is Down syndrome. Dr. John Langdon Down classified the condition, he didn’t possess it - are you following my grammatical lesson here? 

Anyway, this video is so totally awesome - I love seeing adults talk about their condition. Not to mention, how adorable is that baby?! She reminds me of Hannah who makes those exact sounds : ) 

I don’t necessarily know the English cultural references, but everyone in this video is so clever : ) 

What People with Ds Are Tired of Hearing

For REAL Parenting

Serious subjects in the Kron household tonight. 

During dinner, Nora in her usual walkabout/talkabout fashion said she was going to marry a man. Sure, Nora, you can! Then she started thinking... well, if there’s a girl who doesn’t get married in town, then I’ll marry her. Can I marry a girl?

Yes, Nora you absolutely can. She has asked about marriage before and we consistently tell her she can marry whomever she wants. I don’t need to explain what Tim and my beliefs are...

Well. Tim just informed me that while reading her Highlights magazine, Nora saw an illustration of a black boy and made some comment about only marrying someone with the same skin color as her. WHAT THE HELL?! I really hope that’s just four-year-old logic in play?? 

Tim did a great job explaining that we all have different skin colors - even within our own family [pink, peach, olive, etc] and that we love and accept everyone even if they aren’t exactly like us. *We can have differing opinions and still respect each other. 

*Are you listening adults?

This kind of rolls into later down the road when Nora realizes her sister isn’t *quite* like everyone else and we have to explain that even people with delays and disabilities are just as loved and accepted as everyone who is typically-abled. 

Heavy subjects for a Thursday ya’ll!

Just Some Photos

Hey. I’m Nora the Baby.

Typical dinner at our house.

Saturday Morning Sisters : )

MA! THE PHONE!

Peek-a-boo with napkins.

Hannah Updates

Hannah wants to move! We had PT at Children’s on Friday. We only go once a month. I don’t know that we’re gaining a whole lot from it... I guess I want to stay on their “roster” in case we need them after Help Me Grow leaves us at age three [sniff!]. 

Our original gal is on maternity leave, then we had a dude who was a filler, now we have another regular whom I really like and pushes Hannah a little harder - I like that. She noticed that after one month, Hannah had improved - she is trying really hard to climb! 

Hannah can maneuver herself enough to climb our ottomans and shorter steps! Although she doesn’t seem to be doing it the “correct” way, she’s popping her legs up and now pushing herself up with her arms to stand supported! She can’t go as far as standing against the couch, but we’re so proud of Hannah! It’s these small milestones that typical kids breeze past that we cherish. Hannah has to work twice as hard, so it’s much more meaningful for our family. 

Nora and I were driving around today and she said something to the effect of, “Mommy, when I turn five, Hannah will be two. Then she’ll crawl and walk and talk and I’ll cry.” Because you’re so happy, Nora? “Yes.” Then she tried to force herself to cry which was adorable. She gave up; “Mom, I can’t get any tears out.” That’s okay, Nora : )

We had a nice quiet weekend, cheering Hannah on as she pushed herself to supported standing. 

Nora played in the dirt and made some homes for bugs. Hey man, I’m all for a little dirt under the fingernails!

Superhumans

If this doesn’t inspire and give you chills, I don’t know what will:

We're The Superhumans

Talk about badass!

First Anniversary

Jillian Daugherty Mavriplis and her husband Ryan celebrated their first anniversary! Congrats to the couple - role models for many of us new to the Ds community.

First Anniversary