Thursday, June 15, 2017

Nora Quote Roundup

This kid... she’s growing fast - physically and mentally. 6T pants for a while now... long & leggy!

Clearly the word “poop” and farts are the cool thing now. The other night she hit Tim with some toots and said “Smell that country air!!” She learned that on a cartoon set in the country and a character claimed the same. Another character pointed out it smelled like manure and Nora asked me what manure was. So there.

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Then within the past week I caught her sitting on a bowl; “Nora why are you sitting on your bowl?”

“I want to catch my farts.” Right.

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Walking Ailo together one evening, she exclaimed, “Ailo, the world is your bathroom! But not the house.”

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Every morning goes the same; Nora wakes up, goes downstairs, gets the tablet to play some games or watch PBS Kids and asks “What can I have to eat?” Which is the same every flipping day - the food doesn’t really change!! It’s mind-numbing.

This week I told her the litany of options [cereal, bagel, granola bar, fruit pouches...] and she got mad at me! “MOMMY. THOSE ARE ALL JUNK FOODS.” What the hell?!

“Well, Nora, toast isn’t that bad for you.”
“Fine, I’ll have toast and [cherry] tomatoes.” Right.
“Nora who told you all those items were junk food?” 

Nora continuously jabs her pointer finger on the top of her head.
“What? Did you remember or just know?”
“NO MOM, IT’S IN MY BRAIN!” 

She was fired up for whatever reason.

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I can’t keep up with the sass & sauce. Enjoy her Mother’s Day video:

video

Hannah Updates:

Speech: 

Hannah still does not say “Mama.” 


What she does say: 

Daddee
Go
Boyee [her word for dog]
Snacks
Color
Nowuh [Nora]
Papa
Down
Cackuh [cracker]
Something with S’s and a claw hand which means she wants to watch Trolls. 

One of three speech therapists thought she might have a physical issue causing the delay - like her adenoids were causing the problem. This therapist has seen Hannah the least. I was leery of the comment. I followed up with our original ST at the Thomas Center as well as our Children’s ST - both of them did not agree. They just think Hannah isn’t saying M’s yet. 


Just to tick all the boxes, we brought up the adenoid comment with her ENT. Since Hannah really doesn’t snore or have consistently snotty nose, he also did not think Hannah has a physical impediment causing the lack of M-sound. She just... isn’t yet!


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Eyesight

No news here - she had her bi-annual checkup this morning and nothing to report except - keep patching! Wheeeeeee!

Hannah’s new behavior - floor planking.


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Eating & Drinking


Hannah is behind on feeding herself with utensils. It’s a struggle. She just doesn’t care. She’ll eat a few bits [enough to get her heart meds in] then pick up her plate/bowl and hand it over. I struggle with teaching her proper behavior and actually getting her to gain weight. 

Last night I gave her what I thought she’d eat; eggs and toast. She ate three bites of eggs and signed “all done.” I was so mad. I made her sit there while I ate. No Trolls after dinner and no “snacks” - if she wanted a snack, she had to eat her dinner! She was grumpy and turned out to be pretty tired. I think we just have to keep tough with her... she knows how to eat. I just get anxious because her whole life has been about gaining weight. 

I’ve also been thinking we need to get her trained on a regular cup. We’ve been on straws for a while. Hard spout tips are not recommended for our kids because straws promote better muscles for speech. Another item to practice with!

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Toilet Training


The DSAGC informed us all that Cincy Children’s was opening their Developmental Disabilities Toilet Training class to other “needs” - i.e. kids with Down syndrome. A team did a study with approximately ten boys with autism from ages 3-7 years old. After this “intense” training, seven were trained within 7 days. Two were trained within 9 days. One dropped out for timing purposes. 


There are some parents whose kids with Ds have tried this training program without results. So I’m not going to expect an immediate miracle. 


I went for two hours last Thursday night to get an overview. I go back this Thursday night from 5-8pm to get the tools on HOW to train Hannah. 


Three things I’ve already learned:

1. We have to set aside 7 days for the training - ! For real? Looks like Christmas is going to be pee-tastic. 
2. We have to withhold her “reinforcements” for two weeks prior to training - ! She’s gonna get pissed with no veggie sticks!
3. She’s gotta be nekked. 

Looking back, training Nora was easy! She was pretty trained - even at night - before age three. Hannah is a new ballgame - we shall see! 




Tuesday, June 13, 2017

Link Roundup

Just some links I’ve been reading/watching on Down syndrome.

[The first two are videos - grab coffee or tea when you have time to sit for a bit]

A Mom’s birth surprise:
Bethany Van Delft
*Also The Moth is a great way to hear really good storytelling

Socially Constructing Down syndrome  [TED Talk]

I repeat, we are not “special” parents


I’ve written and never hit “publish” on a few political opinion posts [even though this IS my blog]. A lot of policies could affect our family now with a “disabled” member. Not a fan of Betsy Devos. Not a fan of Jeff Sessions. Not a fan of the possible health care act - specifically as it could affect Hannah down the road. 

Wishful thinking: we had a government who would actually work together [you know like most of us at our own jobs] to find proper solutions - then maybe I don’t have to lose sleep at night. Or read [ as best as I can find ] unbiased articles on these possible policies without getting a knot in my stomach. 

So you can read these if you are curious about where we sit - or not:

My son has Down syndrome. The GOP’s health-care bill scares me to death.

Meet Evan Nodvin

Paul Daughtery is much more outspoken:

The AHCA Is Not Who We Are

I guess we all just want the best opportunities [and equalities] for our kids, right?

Tuesday, June 6, 2017

Clever Turd

Nora and I were in the kitchen the other weekend. She told me, “Mommy, how do you like your grocery list?” 

:: I give Nora leery eyes ::

Then I look at my grocery list [written in order of the store, of course]:


Nora!!
I rushed the list over to Tim and tears of laughter fell down our faces. 
“I can hear you guys laughing!” She’s so proud of herself. 

Friday, May 26, 2017

Monday, May 22, 2017

Kindergarten Here We Come!

Last week was a very busy Nora week!

Tuesday was preschool graduation at 6:30pm. Inconvenient for us... we’re typically wrapping up dinner around then. Instead, we left around 7:15, got in Skyline’s drive-thru and weren’t home eating until 7:50pm... when the girls are usually being read to for bedtime!



Photos by Hannah®


Wednesday we woke up to Hannah with a swollen and red eyelid. Craaaaaaaaap. I stayed back to take Nora to her last day of preschool and call the pediatrician when they opened at 9am. Does anyone else feel like 9am is such a late start time? 


Halfway to school Nora declares her belly hurts. She says she doesn’t think she can go to school. Is that a fact? I know she gets slightly carsick and these last minute “Does she or doesn’t she?” really tests me as a parent. 


I didn’t have a lot on my plate at work. She’s pulled this before - if I linger around her too long she takes advantage. Which she did. I erred on the side of taking her home just in case. 


I was mad at myself. I knew she was fine. She was not allowed anything special at home. Why was I a pushover? Because I will never forget the time I took her to Alison’s and she was sick. And I knew it. And when I picked her up that evening, she looked wretched and I will never forgive myself for that. 


So from now on it’s only home if there’s a fever or vomit. I told her once she gets into Kindergarten, you get penalized for missing school. I made her go to swim lessons that night. 


*Oh Hannah’s eye was fine. I saw a whitehead on her eyelid and confirmed with the Pediatrician it was a stye. Lots of warm compresses throughout the day and it was fine. So I basically stayed home with two non-sick children.


Thursday Tim took off to take Nora to her preschool picnic from 11-1pm. Again, super convenient time for families with two working parents [sarcasm]. Nora was also treated to Scene 75 [she loves that place, I can’t stand it - sensory overload]. 


Then Thursday evening we all went down the street a little for Nora’s Kindergarten open house! It’s a brand new school and students only started in there this past fall. I was pleasantly surprised we saw Nora’s actual classroom and even met her teacher, Mrs. Horner! I was surprised they only have two K teachers; one for all-day [Nora] and one for AM/PM classes. 




Nora enjoyed checking out the schoolbus even though I’m not sure when she’ll ride one. We went for all-day K purely due to logistics. Our sitter can’t transport Nora and the bus will not pick her up there. We had to go into a lottery for all-day K and thankfully got a spot. Then we tacked on before and after care [thank goodness that exists now] so we can just pick up and drop off on our way to and from work. 


Nora understand her time at Alison’s is coming to an end, but she’s excited. Bittersweet - she’s been with Alison since she was 18 months old!! 

Nora around 18mos!






Tuesday, May 16, 2017

Mother's Day

Mother’s Day 2017 was perfect! 

I had a two-year streak of not-super Mother’s Days... 

In 2013 I was prepping for a Monday colonoscopy. Everything was fine, just some “results” of giving birth that have changed my body :: eyeroll :: So that Sunday prep was the absolute worst. I’m a firm believer to get one when you need it, but not until you need to. The “cleanser” I drank was so disgusting I gagged. And the physical “cleansing” is nearly as bad as labor. No, really - I cried. 

Anyway, then in 2014, I’ll always remember Mother’s Day as The Day Before We Found Out

Since, then I’ve enjoyed chill, uneventful Mother’s Days. This year was no exception. 

About two weeks ago Nora had her Mother’s Day program at preschool. It’s at an inconvenient time for us who work outside the home - 10:45am. However, it was a good opportunity to take the day off for Nora. Bless her heart, she was so excited. Continuously thanked me for taking the day off work. 

Handmaid's Tale?

She is rocking the side pony just like I did - !


After her program, we went to lunch at a cute cafe in Milford, then to the sweets shop. She just beamed. It was rare and sweet to be with Nora outside the house, just the two of us. It doesn’t happen enough. 

On Mother’s Day I ran almost 5 miles, groceries solo, ate baked goods, did some flower-buying and planting. Just general time outdoors is nice - now that Hannah is walking this spring, it somehow feels easier to get outside. Though it is tiring to chase her - she doesn’t know about safety yet. No fear. 

Family walk!



I’ll miss that tree even if it did cause roof moss.

Oh, our furnace also went out a week ago... thankfully not the system [yet].
The thermostat was old and done so we came up to 2017 with a Nest Thermostat!
It’s bizarre to have such a modern, “smart” appliance in the house.


And Saturday was equally good - I took Tim out for his birthday outing - our first FC Cincinnati match! Aunt Stephanie again selflessly watched the girls for a lengthy near-five hours alone while Tim and I enjoyed some apps and a beer - outdoors, sitting and quietly - before the match. It was lovely! We were home at a reasonable 7:45pm to take over the girls’ bedtime. 



Great weekend and finally feeling like spring!

Friday, May 12, 2017

The Lucky Few

I follow Heather Avis on social media - her and her husband were not able to have biological children. During the adoption process, they were tipped on some babies with Ds who needed homes. Fast forward and they have three adopted children, two with Ds. 

Being a Mom doesn’t mean they have to be your flesh & blood - just having a full heart to raise good people : )

She has a book available out, The Lucky Few, about her journey and learning. 

Down syndrome Adoption

Heather Avis

Thursday, May 11, 2017

CCHMC Mother's Day

Send a message to Moms who have to spend their day at Cincinnati Children’s! For every message sent, Busken will include a cookie!

Happy Mother's Day


Thursday, May 4, 2017

Hannah’s Medical Updates

Hannah had a hefty day Tuesday April 25th. It started as her rescheduled annual echo/EKG and added on her PE tubes - not due to constant infections, but due to held fluid that was affecting her ears.

Originally we were scheduled for an 11am echo, 12pm EKG and 12:10 Cardiology follow-up. 


We were given instructions to arrive at 7:15am - ! I didn’t understand why so early, but who am I to question the medical schedule? 



The morning went well and I was really more anxious about her lack of food & water before the procedures than the procedures themselves. 

Hannah was pretty good - she was so distracted with where we were, I don’t think she cared about thirst or hunger. [Nothing after 4:15am - right.] Literally every nurse exclaimed how cute Hannah was - I think the glasses have a lot to do with it, but I mean come on - she is adorable : )


Loves putting on socks!



Passing the time!



Around 8:45 we took her to the side room of the OR with the anesthesia team. We all sang Old MacDonald Had A Farm while I held her down... she was out under 30 seconds - it was crazy. And rattling seeing her go floppy so fast.


We grabbed our items and shuffled out to the waiting room. The same waiting room we were in almost two years ago for her heart procedure. I was surprised at the emotions that bubbled up being in that waiting room... sheesh. 


Tim and I grabbed a quick breakfast and headed back up - we weren’t even gone 45 minutes when we were told she was done. Dr. Shott said it went just fine and the fluid in Hannah’s ears was the consistency of rubber cement! I’ve been told by two other Moms that she described their sons’ ear fluid the same : )

Seeing Hannah afterwards was difficult. First, a nurse was holding her and once we arrived, I took her and my poor girl was inconsolable. Probably confused, scared, foggy and a painful IV in her hand. We sat for 20 minutes until she calmed down. 

We went to the cafeteria and the poor thing was exhausted - she slept a good hour in her stroller which was fine - Tim and I could grab some food before our 12:10 Cardiology follow up. 

Poor little ragamuffin with her skinned knees.

By the time we got to Cardiology, you’d have no idea she’d been sedated for a minor procedure just hours before:


We had a nurse and the Cardiology fellow stop in to see us and didn’t see our Dr. for an hour and a half past our appointment time. Apologies just aren’t worth it. 

What I thought would be a routine “everything looks great” - was not. Nothing serious at the moment. Hannah’s left heart valve is leaking/regurgitating more than it was a year ago. So right now she’s going back on a pill 2X a day to control that regurgitation. We’ll follow up in one year.

Will the leaking get better or worse? Her doctor can’t predict - it’s very subjective. Could get better, worse, or stay the same. If - heavens forbid - it continued to worsen, surgeons would have to go back in and repair again. 

Not at all what I was expecting to hear. I guess I blindly thought - and was told - Hannah’s type of repair was typically a one-and-done repair. Just the thought of even a slight chance of going through that procedure again makes my body start to shake. I have been through that battle and I am not sure I could muster myself to power through it again. I had put all those feelings aside and now they are creeping back.

I know many kids who have - or will - go through multiple procedures but I can’t swallow the possibility when I thought we weren’t supposed to go back. 

I know this may not even happen... I plead and am desperate for the pendulum to swing back. So please, please - if you believe in a higher power or any cosmic persuasions, I beg you to put Hannah’s health in your prayers, chants, dances, what have you.