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

Tuesday, November 24, 2015

Giving

After having Hannah and all our experiences with DSAGC and Cincinnati Children’s, I have a strong desire to give back to those who took care of us. 

Thankfully there are many ways!

Not all families can keep up with the needs of their children with Ds - DSAGC accepts donations all year, but specifically during the holidays they have Giving Tree:

Giving Tree

So after our awesome Buddy Walk donation through our family and friends, I donated more for this season. 

Second, you can do something as simple as buying toys for the children who are at Cincy Children’s for an extended time:

Cincinnati Children’s Gifting

Cincinnati Children’s Wishlist

I might not be able to give a lot, but if a few toys can bring some cheer to those who have weeks if not months there, I’ll do what I can!

I’m a grown up with a steady income, so if I need something, I just buy it. I’m stubbornly practical and don’t need gifts - so Tim and I felt so good helping people who really need cheer this season!

One of Hannah’s stays: Child Life brought in a mobile and crib attachments to keep Hannah entertained.

Sunday, November 22, 2015

Slight Eating Success?

Tim took Hannah to a double therapy session on Friday; PT [physical therapy] and ST. [speech therapy]. He said she had a great day!

The PT noticed Hannah is stronger in her core than last visit [she can stretch/bend while sitting all the way to the floor]. 

Hannah did very well with ST, too. The ST actually suggested holding back a feeding per day to make Hannah hungry. My immediate thought was, “Well the doctors will LOVE that [sarcasm].” But it makes sense.

SO - Saturday it just happened that Hannah fell asleep in the car close to 10:30am - when she’d typically have a feeding. When she woke up, she had a snack and her “smoothie” at 11:30 - so basically we pushed her feedings out and she only had two afternoon feedings. 

We had dinner at a friend’s house and Hannah was hungry and we were astonished at how much she ate that didn’t come out; probably 1/4 cup of food in one sitting - that’s crazy for Hannah! Mashed taters for the win!

So maybe this skipping a feeding is the key?

I tried it again today... it seems to work. At dinner she was shoving bread pieces in her mouth and kept opening her mouth for beans. 

If she’s getting her calories from this extra food that’s staying in, it should balance out calories she’s “missing” from her smoothies. 

-------

Tim and I reviewed the reports from Hannah’s Thomas Center evaluation... it’s hard reading about your delayed child... especially when she’s even delayed among her peers. [And they report that way to make sure insurance covers therapies!]

There are little ones younger than Hannah with Ds who are even standing on their own. It’s not easy. You can tell me “Hannah will get there in her own time” until you’re blue in the face - it doesn’t make it any easier for me. 

I truly don’t think of her Ds on a daily basis. When I get sad about her delays, I “blame” it more on her stomach and heart defects - I feel like those are the hurdles that have made it more difficult for her at this point. 

But darn it, she’s still the cutest 14-month old I know!


Our Fuzzy Buddy

There’s never much to say about Ailo because... he's so easy! We rescued him on St. Patrick’s Day, 2010. He’s a mix of more than 7 breeds but most resembles a flat-coated retriever with brindle pattern. Pretty boy : )

He’s been a patient of Banfield [at Petsmart] since we had him. Since he’s mixed breed, he’s been very healthy [knock on wood] and within the past 2-3 years we only get dinged on his teeth. We tried dental treats [$$] but they just didn’t do the trick. 

So of course we were convinced to up our health plan on Ailo which would cover a dental cleaning. 

This first dental cleaning - in six years - was this past weekend. I took him in at 7:30am. He had to go under anesthesia. He was up around 1pm and they monitored him for two hours after. 

As soon as Tim brought him home I could tell the poor dog was out of it. He’s the happiest, goofiest dog I know and poor guy hasn’t lifted his ears, hasn’t had a happy pant... I’m sure the anesthesia takes time to wear off and his mouth is probably sore. 

We got him some soft treats because he won’t touch his hard food. Banfield said he’ll be this way for up to 24 hours... hopefully poor buddy shakes it soon, it’s hard seeing your fuzzy love so unhappy. 

At least his tail is still wagging, but his whines are hard to hear : (




Tuesday, November 17, 2015

* Fist Bump *

Nora asked me to read the note in her backpack this evening. I almost choked up! 

This is what makes all the tantrums, attitude, sass, and frustrating times worth it:


Saturday, November 14, 2015

Just as Thankful, Just as Blessed

Things here have been GOOD. Even with slight runny noses and a busy schedule, we’re really good!

Tim and I went out twice [what??] in the past three weeks with friends. We were able to celebrate Tim’s 40 1/2 birthday since Hannah was in heart recovery on his 40th back in early May.

This winter will be a lot less anxious and stressful than last winter trying to prepare for heart surgery!

The holidays will be relaxing and I won’t be pumping! Woooo!

While many express their thankfulness and “blessedness” this season, I still feel a bit sensitive when others express comments about their children’s health ... Someone pinpointed my feelings well: I feel like a measuring stick to others. “Gosh, thank goodness I don’t have to deal with THAT.”

Just because my child isn’t typical or has medical hurdles and special needs doesn’t make me less thankful or grateful for what I have. Anyone with a child is blessed, no matter how much or little medical help they need. I’m just as #blessed as the rest.

...which I know is unfair and nearly never the case. Everyone is simply happy about their own situation. I admit I compare our life to those who have it harder than us [which is not hard anymore!].

I think we’ve just been through so much the past year and a half and I’m still haven’t shaken the “Why us?” My personality type is just to compare which I dislike... I can’t help it! “Comparison is the thief of joy” - this quote is seared in my brain now!

I also want to get better at gratitude.

I’m truly grateful for everything we have... I just need to get a little better and practicing it : )




“Grumpy” Nora

She can’t stay grumpy!

Halloween bowtie from Aunt Molly!


Hannah on her first wagon ride!



Thursday, November 12, 2015

Hannah’s Neurology Appointment

Just to get it out of the way: we are in the clear with Neurology - which my gut had told me.

Hannah’s tongue had started quivering in the beginning of October... we thought it was involuntary. Then we observed she did it when she was happy/content. We’d seen 3 different speech therapists and an ENT who all dismissed it as a developmental “thing.” One pediatrician suggested we just go to Neurology to check all the boxes. 

They asked a lot of questions about behavior and development, when her tongue quivers happened. I even had video to show. 

The Neurologist was an older gentleman and after poking her and observing her, said “I don’t know what this is.” - !! For real?? I can’t believe he’d never seen something like this. Since she has no other symptoms/signs/behaviors linked to a neurological anomaly, he basically let us go and said to contact them if anything evolves! 

So I left happy knowing it’s one more appointment OFF our list and taken care of. 

:: thumbs up ::


Tuesday, November 10, 2015

Sad Story [not our own!]

I don’t listen to country music. I’ve never heard a song by Rory & Joey, but have followed them since Hannah was born because their daughter - who is 6 months older than Hannah - also has Down syndrome. 

Unfortunately, Joey was diagnosed shortly after Indy’s birth with stage 4 cervical cancer - they thought they’d rid of it, but it came back with a vengeance and she is currently in Hospice care at age 38. 

I think the reason their story makes me come to near tears every time I see a headline [as opposed to so many others I know who battle] is because I feel a connection with her having a young daughter with Ds. Which seems simplistic, but I don’t know how else to explain it. The photos of Indy resting on her Mom in a hospital bed don’t help the emotions stay down!

Joey & Rory

Tuesday, November 3, 2015

Oh Snap! Sick Mama!

I cannot remember the last time I stayed home sick from work... December 2012? 

Sunday night my stomach was upset - uck. 

Woke up Monday and things were Not. Right. I barely managed to get the girls to the sitter. I had already showered and dressed for work and drove straight back home to tell them my status. 

Nauseous/upset stomach, achey, chills, and... “bathroom trips.” It was rough. I was so thankful we have such a great caregiver so she could take care of the girls while I laid in bed to restore myself. I took two naps! Two! The last time I took a nap I think I was pregnant with Hannah! 

I couldn’t believe how bored I was! Typically when I’m home I’m cranking through house projects. Not yesterday; I could barely muster the energy to get upstairs to bed! Though I won’t lie; some catch-up on magazines and HGTV was pretty awesome.

So by dinner time I was feeling better, able to make dinner and tidy up a bit. I knew I was feeling better when I started cleaning the kitchen sink - ha! 

As I thought, it was a 24-hr stomach thing. Blech! Thankfully I could stay away from the girls and pray I kept my distance long enough so no one catches it! 

I felt like a million bucks this AM - back at it! 

Monday, November 2, 2015

Halloween 2015

After 3 years here, I finally realize I only need one bag of candy to hand out - can you believe it? I’ll take it. Makes for a chill evening! Nora only went to about 5 houses. Since her bucket is small, it filled up fast with mac-n-cheese, animals crackers and toys! 

Nora was Minnie Mouse for school, became a ladybug for beggar’s night and Hannah was simply a kitty. 

I'm all about using last year’s costume!