Baby Glasses Here We Come!

Today was Hannah’s first eye appointment - another on the list of items for kids with Ds to check off their list : ) 

I was a little nervous; her left eye has turned in for as long as I can remember. Her tear ducts  are small and eyes can be goopy. I always wondered if she was able to focus on us too; it seems to take her a while to see who comes into a room. 

After 15 minutes of waiting, we went back and I answered her medical history. The nurse [?] checked out Hannah’s eyes while she sat on my lap. Dr. Motley came in, took a look, then Hannah got some dilating drops. 

We had to wait 30 minutes [!] until they called us back again. 

We had a super-entertaining wait; I think it was a Grandma and her Grandson... He was “jolly” and loud with a flat-billed hat, maybe seven years old. Grandma was all about Hannah; “Ooohhh she look like a livin’ DOLL! She don’t even look REAL!” Um... thanks?? Hahahaha! She just gushed over Hannah, I loved it. Later, as her and her Grandson were leaving, she waved him over to look at the “Dollbaby Girl.” 

The little boy came over, looked at Hannah and loudly said, “She don’t look like Chucky!” I could not control myself; I bust out laughing, “Well I hope not!” He went on a bit of a ramble about seeing Chucky in the store and running away, then telling me not to let Hannah watch Chucky and that she should only watch Disney Jr. ... it was a HOOT. Made my afternoon. 

Dr. Motley took another look at Hannah’s dilated eyes... 

In summary; Hannah’s left eye does turn inward and she has a bit of far-sightedness. To correct the turning, we’ll start with baby glasses! Which is what I prepared for and am totally fine with - not sure how Hannah will do with them - ?? In 6-8 weeks we’ll go back and see how her eyes are doing. If they are straightening out, all good, probably stick with glasses part-time. If not, we’ll do a patch over her strong right eye to let the left eye straighten out and strengthen. 

The glasses are flexible plastic with a band around the back:

Whew! So baby glasses - all good. Let’s hope it can help her out a bit. Surgery would be a last-ditch effort, but Dr. Motley didn’t see that as necessary - whew! Lord knows I don’t need another surgery - am I right? 

For your viewing pleasure: Hannah smoking a veggie stick. Don’t smoke, kids.

The Long Sick Week That Just Won't End...

Oh this week.

Thursday we took the girls to Alison’s... her kids were on the same sick track so who cares, right? 

My parents came later that afternoon to watch the girls because Tim & I were going to see a concert in Oakley at 20th Century. I typically do not go to shows on weeknights anymore. Children. Work. You get it. Well, add sick kids to the mix and I really should have just stayed home. 

We had been up since 4:30 that morning due to Nora. I ran at 5am. I think the best part of the day was eating dinner and having a beer in Oakley with fun people. THAT was relaxing. 

I just could not enjoy myself at the show - as good as the music was. I was exhausted, the music was SO loud... Tim was his awesome self and compromised - we left around 10:45 before the show was over. 

I can’t even entirely remember, but I think Nora was coughing around 3am, then Hannah coughs EVERY morning from about 5-6:30am. No joke. 

Friday AM after life-saving coffee, I took Hannah to a new speech therapist closer to home. We didn’t particularly learn anything new. After seeing three speech therapists with the same opinion, I think I’m finally reassured that Hannah IS on the right track... it’s just a long track. 

Friday night was rough trying to soothe Hannah in her post-surgery crying. We would have let her cry it out a bit, but she’s sick, so we couldn’t let her go long with the coughing : (

Summary of my week.

Saturday night was slightly better in that we had solid sleep from about 10:30-5am when Hannah starts her coughing spell. 

Sunday was a beautiful day and we took the girls to our annual zoo trip. Hannah was still rather cough. We ran into our friends, the Morris/Godfreys. 

Oh hey - have I mentioned Nora is in the “I Want To Dress Myself” Phase? Yay.

While I wanted to watch the Bengals, I had to make pasta salad, do laundry and get boxwoods planted so they wouldn't die. 

Hannah was a bit of a crank this afternoon and she got another fever around 102! GEESH. The Pediatrician had said this virus would last 10 days.... we’re on about day 8. 

OH - and I’m feeling like crap now - big surprise. Lack of solid sleep, sick kids... 

I’m really hoping we get a break mid week when this virus is supposed to end... Ack! 

*Thank you to all Grandparents for helping our sick kids this week!

It's Only Wednesday, But Clouds Have Lifted

It's been a long week. And it's Wednesday. 

Sunday night the sitter texted that her kids were under the weather. The girls went to Nana's Monday, however Nora complained of a hurting ear and Hannah had goopy eyes. Tim took them to the Ped; Nora had a minor ear infection and Hannah has some viral cold. Great. 

Tuesday they weren’t too bad/no fevers, we sent them to the sitter. Both were exhausted at the end of the day; not much rest and being sick. They were both asleep by 7:15pm - !! 

Today they both woke up coughing and snotty so I stayed home. Barely fevers, 99˚ or 100˚.

Around 10am I received a call from Children’s that there’d been a G.I. cancellation with Dr. Kaul and if we wanted to get in today - ! This is the appointment I’ve been yearning for, which wasn’t supposed to be until Oct 28th! YES! 

Nana graciously came and sat with Nora while I took Hannah [Thank You again, Nana!].

Dr. Kaul was amazing. The first thing he did was coo over Hannah. Big points! A very eye-opening appointment with lots of clarity. He asked how often she’s getting speech therapy. “Once a month with Help Me Grow, once a month with this center.” He gave me a crazy look. He was shocked speech wasn’t being more aggressive - !! He literally paged our speech therapist while we were there [she never showed up]. So he’s going to push that. 

Then he asked how often we change Hannah’s g-tube. “Uhh... the cardiac team did during her heart repair.” Apparently these things need to be change every 3-4 months and no one told us - !! Dr. Kaul was clearly annoyed because the surgical team had released us when Hannah was younger, but failed to really manage us - clearly!

We discussed the blenderized diet. Dr. Kaul wants us to do a mid-way adjustment with what is essentially a pre-packaged smoothie. We'll see how Hannah does with that, and if she's good, we'll get our own recipe to make at home. [side note: our insurance does not cover a blender for medical purposes, however Nana's 30% Kohls coupon comes to the rescue!] 

Dr. Kaul is the first professional who actually asked to HOLD Hannah! He snuggled her and baby-talked her - it was amazing and glorious - now that's a professional I want helping my baby!

While we were there, Gerry, the assistant, was kind enough to actually swap out Hannah's tube with a new one! We CAN do this at home, however, Tim nor I can stomach it [heeyy-oohh!]. We can bring her in, or Nana said she can do it too [she was a nurse at St. Joseph Home]. 

Gerry asked, “So you use a new feeding tube every week?” “Um, NOOO!” I was super animated. She said our insurance covered an entirely new KIT of tube/button/etc per WEEK - WHAT?? Additionally, these infant smoothies are covered, too. * cue head explosion *

Talk about inter-hospital mis-communication! The GI surgical team let us free to go home and never followed back to manage us. Thank God I got referred back to the Thomas Center GI team to get us back on track. 

The last cloud to blow away for the week was a snafu with a physical therapy bill - we don't typically GET therapy bills. I was freaking out about the out-of-pocket. Thankfully the statement was wrong and all Hannah’s therapies ARE covered so I had a huge sigh of relief. 

Now if these girls would just get rid of their colds... : )

Buddy Walk 2015

The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

Last year, Hannah had just been born and was in the NICU! 

This year, we were full force and continued the party at home since she just turned one last week : ) 

Tim did an amazing job making our adorable shirts for Hannah’s Banana Bunch. He designed the shirts, took orders, etc. We sold 125 shirts! The profits went directly to our fundraising efforts to help the Down syndrome Association of Greater Cincinnati. 

DSAGC are an incredible group in our city that reaches out to individuals and families with assistance and programs from prenatal to adulthood. The Buddy Walk is their biggest fundraiser each year. And Cincinnati has the biggest Buddy Walk in the nation! Around 11,000 people attend in recent years! Again, a great city to have support and advocacy!

We had a great day, followed by a small birthday celebration for Hannah.

Preparing for this day and reflecting on the year always brings me a few tears. Lots of hard work and tenacity. Wonderful family and friends who donated and/or walked with us. I was filled with happiness as we started our few steps of the walk - I was good and held in the tears. 

After opening Hannah’s gifts this afternoon, I thanked everyone for their support the past year... I tried to keep it short, because if I kept talking, I would have lost it : ) 

It’s a great new tradition for our family and I encourage everyone to come walk at least one year with us! It’s a special day.

The PHOTO of the day! Great shot, Papa Kron! The Head Banana!

Cheesin’ with Aunt Stephanie

What a day!

Nora & Daddy

Nora’s Bestie, Ava!

Nora & Her Boys [Kieffer Cousins]

Nora & Grammy Batty

Ahem! Nana saw Teddy Kramer, the Reds Bat Boy! Great call getting a photo with a local celeb, Nana!

Family Photos!

The last time we had family photos, Nora was nine months old! 

I knew I wanted to wait until after Hannah’s heart repair and get through the weeds before celebrating with some photos. 

A sweet photographer who was about 36 weeks pregnant captured us well! I would recommend her to anyone! Maria Lynn Photography

Here are my favorites!

One. Year. Old.

[I’ve already posted this on Facebook for most people, but as this is my family journal, will post the same here.]

One.Year. Old.

The fastest, slowest, scariest, most joyful, stressful, and totally-worth-it year of our life. 

That extra chromosome terrified us. I was afraid of the baby inside me because of perceptions I had.

This baby has been through more, is stronger, is happier than most adults I know. “Healthy“ is a relative term. 

I’ve said it before and I’ll say it again; she’s taught us mounds of acceptance, love and patience. I agree with the sentiment that one of the hardest parts of raising a child with Ds is educating others and fighting perceptions and stereotypes. Do not underestimate my child - she and her family will be fighting to make sure she gets every opportunity a child with 46 chromosomes gets. 

Hannah, your smile and strength will take you to the moon… We love you unconditionally Baby Girl.

Shenanigans

12 Months, Week 4

More shenanigans from Christmas Break...

PASTAAAHHH!

Cool, Baby.

It’s my baby in a box!

Nora buggin’ on Uncle Jonathan to see “babies” on his phone.

Cousins Egon and Ailo wrastled for about 3 hours nonstop.

Cool, Dada.

Egon has to escape to his Daddy’s arms for a break.

Christmas Week Continued

12 Months, Week 4

Christmas Day was just great - again, last Christmas was just a fog with a 3 week old, so it’s been much more relaxed and enjoyable with a 1-yr old!

Christmas morning Nora opened her gift from cousins Izzie and Alex - a gorgeous piggy bank to start saving money! Thank you! 

I made a non-healthy [!] breakfast casserole with tater tots, eggs and cheese. Good stuff - for just one day! 

We spent most of the day at Nana & Papa’s with the Kieffers and the Iglas with their new beagle puppy, Egon! He’s 8 mos old and a bundle of fun - Nora enjoyed him a ton, he was just her size! 

Ailo wants to see, too.

Nice to meet you, Egon!

Daddy drives me around in a box!

Squidward

12 Months, Week 3

We started calling this Nora face “Squidward” probably around 3-4 months. It’s her “I’m fed up” face. It’s funny and cute. Nora, don’t be mad at me for comparing you to this fun comic face.

Attempted Photoshoot

12 Months, Week 3

Well the first one was good...

Got it!

Errr...

Squidward

Restless...

I’m outta here.

Christmas Week

12 Months, Week 3

I love Christmas. I preset the Christmas radio station. I watch the Christmas specials even when I didn’t have a child. So this Christmas has been lovely; last year I was a Nervous Nelly New Mama who was sleep deprived and worried that my baby was comfortable and cool. 

Our Christmas Week kicked off with a Batty family get-together at Aunt Suzanne’s in Fairfield on Sunday. All her sons [and two daughter-in-laws] were in from Chicago, Missouri and Spain - ! A rare and special occasion. It’s like a second home and though we don’t see each other often, they always felt like our brothers - 3 Batty Girls and 3 Coffman Boys. I didn’t get to catch up as much as I wanted since now days I have to chase after a 1-yr old, but enjoyed the time I had. Nora got some amazing books from Chris & Todd - The Monster at the End of This Book, The True Story of the 3 Little Pigs and The Stinky Cheese Man. So sweet!

Monday we hosted our first Batty Christmas Eve - our family has always opened gifts on Christmas Eve - it started when as children, we went to 5pm evening mass on Christmas Eve and when we got home, Santa had been to our house! I think it was because “Batty” was at the beginning of the alphabet - ?? Either way, we’ve kept up the tradition. 

Our day was lovely and casual. I enjoy being a hostess even though at the end of the day I’m exhausted - it’s fulfilling. I’m very excited for next holiday season when we can host something in what - hopefully - is our new house. Dining table here I come! 

Nora loves her Batty Aunties!

Hanging out with Grandpa Batty!

Cousins Brian & Scott [a happy house when the Bengals won!]

Intent on the Bengals

Aunt Katherine & Nora

Wiped out!

Post - Batty high!

Watching Sesame Street for the first time!

Loving time with Grammy& Grandpa Batty