Tuesday, December 29, 2015

Toofers!

You should all know by now that Down syndrome doesn’t mean “disabled” - it mostly [but not always] means “just delayed.”  

Did you also know that delay also comes with teeth? Hannah’s teeth are finally popping up! Fifteen months old! Not only do kids with Ds have delayed teeth appearance, but the order they arrive isn’t necessarily a typical order either. 

Hannah’s lower left tooth is finally popping up and some random upper left tooth [maybe a molar] is falling in. 

Now you know! And hopefully now Hannah can chew even better : ) 

Sunday, December 27, 2015

Christmas 2015

For those not in Ohio, Christmas was a bit of a letdown because... weather. It’s been consistently mild in the 60s with rain for what feels like a week. Blech.

I think the addition of a job that was SO busy in December and two little children... I’m currently not able to “slow down” and enjoy the season like I did years back... I think once the girls get a touch older, I might feel the holidays slow a bit. 

Christmas Eve was a nice quiet day at home. We went out to dinner at our local pizza place, Padrino’s - Hannah ate half a piece of pizza! Girlfriend was so hungry, she was whining/crying which we’re just getting used to! 


Assembly on the 23rd...

My complete fail at gluten-free muffins; basically dense scones : P

Choco-peanut butter cookies for Santa.

Hannah with her favorite food; veggie sticks


Christmas morning was nice - the girls slept until about 7:20am which is delightful. Nora was in wonder of Santa eating his cookie, leaving the fireplace screen open and leaving a note that Rudolph drank his milk! 



Veggie Sticks?? What a surprise! :: sarcasm ::

Christmas morning Ladies


Santa left the girls a great dollhouse with furniture and a family of three. We had a nice morning and headed to the Krons later that PM. A nice laid-back day. Santa always finds time after his big night to stop by and give the kids gifts : )  However, Nora’s feelings towards Santa - specifically at Nana’s house - have become increasingly worse. Last year she hid behind Aunt Amy: Nora Hiding 2014 This year, when he rang the doorbell, she bolted for the bathroom and stayed there until he left! Which is bizarre because she had NO problem sitting on Santa’s lap at preschool - we think Uncle John - er, Santa at Nana’s house - has a very booming/boisterous voice which may intimidate Nora. 




... but THIS Santa is okay - ?!

One week before Christmas at pajama day.




Saturday afternoon was Schmidfest - the Kron extended family gathering - always fun seeing Tim’s cousins in and out of town. There were three “baby” girls there; Hannah, 15 months, Rose, 14 months, and Bethany, 9 months. Ava, 14 months, was missing due to being sick : ( I know Hannah is incredibly delayed with her motor skills, but I wasn’t too frustrated - she was so happy and babbling and rolling around. She’s where she needs to be. 


Nora & Janie

Bethany & Hannah

Hannah & Papa


Nora loves seeing her [second? once removed?] cousin, Janie - they’re about a year apart and seem to really enjoy playing together : ) 

Sunday my family changed things up and came to us. It was a casual, fun time. Nora put on a full production of the Little Mermaid. ‘Twas a good day.


Sistah, Sistah!

Hot Mom Alert! [Barb, not me]




Wednesday, December 23, 2015

Hannah Updates

We’ve had a few appointments before the end of the year including a recipe for our puréed diet for Hannah - woo!

I took Hannah for both physical and speech therapies last Friday. Physical therapy is still a slow road. The PT was trying to push Hannah over from a sitting position and Hannah was sturdy! Strong core. 

Still working on those arms and getting her onto all fours. Our sitter has said Hannah is pushing up on her arms from her belly which is a great step!

Hannah working on her bench sitting!


We have been trying to hold her up to stand on her feet... she can sort of bear weight, but falls fairly fast. No inclination to actually STEP. It’s interesting how, again, while this is intuitive for most kids, others can have a very hard time even coordinating to lift a foot and move it forward.

Hannah’s eating has really progressed well! I would estimate she’s eating half of the calories she needs per day [my guess]. Some things still don’t quite stay in [I’m lookin’ at you, cottage cheese!]. But really, everything is staying in now and I’ve had to send more food to the sitter. She probably eats a good 1/4 cup of food every night at dinner. 

We finally received the purée recipe - moving away from those expensive shakes with weird ingredients! *I say expensive because we’re being charged an excessive amount of money through Children’s Home Care after we were lead to believe it would be covered. It’s not. To the naked eye, it seems they are either upcharging or charging us for quantities they never provided.  :: end rand ::

I feel better knowing Hannah is being tubed mostly whole foods now.

We were supposed to work our way up to FIVE feedings a day - about 1/2 a cup per tube feeding. Which negates the progress we made with speech therapy where we took a feeding AWAY to make Hannah hungry; therefore she seems to be eating more. 

Net: we’ve kept to four of these feedings a day and Hannah will still get whiney because she’s too full! Our ST told us to go with our gut [har har] and keep the amount down. 

I took a photo of the recipe - keep in mind this is not for flavor! Pure nutrition. My only problem is the strained meat - really? If it’s just for protein, I’m pretty certain all that plain yogurt will suffice. Those jarred meats have reassured me that my gag reflex still works.



Thursday, December 17, 2015

Nora's First Holiday Program!

Nora’s preschool and they had their Christmas Program last night - it was just adorable! She has been geezed for weeks now.

*Just a side note, we only chose a preschool based on convenience/where our sitter was taking her kids. We do not attend nor currently practice any specific religion which is a whole ‘nuther can of worms I will not open here.

Nana & Papa stayed home with Hannah so she could get to bed at her regular time. Next year we’ll keep Hannah up a bit so that the rest of our family can come and enjoy. 

Tim and I arrived timely enough for Nora to get to her classroom. However, church seats were already over half full! And people were saving entire pews for family :: eyeroll ::

We were able to see well enough. The teachers walked the kids up to the altar to sing their class songs [there were three classes]. It was jarring to see how little they looked walking up among a large adult crowd. Nora was observing everything, trying to find us. Once she was up on the stands, she found us and was all smiles : )

It was funny to see the little ones smiling and waving at their families, and all us silly adults had huge smiles, waving back. Saccharine sweet! 

After each class sang their songs, they all came together for all-school songs and a small play. All the three-year-olds were in the “host of angels.”

Afterwards, we gathered Nora from her class, ate cookies, and drank lemonade at the reception. 

We arrived home around 7:45 - just at Nora’s bedtime. My cheeks were sore from smiling so much : )


Friday, December 11, 2015

New Show Featuring Ds:

A new show on A&E is spotlighting a group of young adults with Ds who live in a home together and documents their joys and challenges. 

I’m not sure if we get A&E ... however, we barely watch TV. I know the first episode is available to watch online. I’m looking forward to watching. My only experience is with a baby with Ds, so it will be interesting to possibly see into our future...

Born This Way - Description

Born This Way - Episode 1

Tuesday, December 8, 2015

Nora is Four!!

Four. Four years old!

Like I mentioned, poor Nora’s birthday is shoved into Thanksgiving since her birthday is December 4th. She doesn’t know or care - more celebrations with family!

She was showered with lovely gifts at the Battys. Grammy & Grandmpa rolled birthday & Xmas together [as all us December birthdays know] with a bike! Training wheels, of course.

Nora asked me to hold her hand while everyone sang to her... I almost got emotional thinking about how quickly [?] four years can go!




Hannah is not so sure.








She was showered again at the Krons. Her friend Evelyn and Evelyn’s Mommy & Daddy graciously came over to help Nora celebrate, too. 


Oh, Cinderella. Aunt Amy went ALL in : D







Sunday, December 6, 2015

Thanksgiving 2015

Thanksgiving 2015 was lovely - and I wasn't pumping! Woooo!

Relaxed and quiet at the Battys. Full and festive at the Krons. Thankful the weather was so good! All the kiddies could go outside and get their wiggles out at Nana Kron’s. Nora enjoyed her time with her cousins Izzie & Alex who were in from Dallas.

Both families celebrated Nora’s birthday... we briefly thought about having a friend birthday for Nora, but she’s still young enough and we haven’t attended too many parties that she feels she [or we] feel we need one yet. I feel bad shoving her celebration with the families’ Thanksgivings, but why get together the following weekend, right?

Thanksgiving was lovely... however; Hannah is super susceptible to sickness with the extra chromosome... Tim and I both had a feeling Hannah would get sick after seeing so many people. Well, she did : (  Wednesday I got the call from my sitter; Hannah had a fever of 103˚ around lunchtime. She received Ibuprofen and it spiked only five hours later again...

My Mom graciously came down to watch the girls Thursday after an AWFUL night of sleep. Hannah moaned all night... I slept maybe five hours just to keep an eye on her that her fever didn’t jump randomly. And of course Nora woke up that night at 2am to get water with our help. Sigh.

The day after her fever, the torso rash appeared: Roseola virus! Thankfully [?] we knew what it was since Nora had it and it’s so common. Today is Sunday and the rash is still around, but Hannah is totally herself and hasn’t had a fever since Wednesday.

I’m not sure if Hannah will always be this susceptible to viruses or only when she’s younger... but it makes Tim and I think harder about what situations we can expose Hannah to!

We also set up our tree and décor of course - I’m slowly accumulating but not out of control - it takes time to set all this stuff up! Thank you Michaels!


Worn out girl with her birthday blankie from her Aunties!
Nana & Papa Kron with all their grandchildren!

Outtake!

Hannah and her fans : ) 

New table décor from Michaels.

Cinderella in her castle.

Sisters being silly

Holiday ambiance - all about the cozy!

Out to dinner on Sunday - big girl!

Touching Ds Video

Another touching video for those who might unexpectedly learn their baby has Ds, and to also educate:

There is Nothing Down About Down syndrome