Running Update

Last week was the Hudy 14K/7K in town - I’ve always enjoyed it; great after party, pint glass “trophies” and medals that are bottle openers. 

14K is about 8.8 miles. This and the Heart Mini 15K are my favorite distances. Not SO long that you have to train SO hard. 

Two of my coworkers ran as well... both of them felt it was hard. I knew it was hard, but still enjoyed it. I think the only easy race in town is the Heart Mini because it is the ONLY flat race. Every race in this city is guaranteed to be hilly. 

I did way better than I thought; finished in 1:27 with a 10:06 pace - very good for me nowadays! My typical pace at home seems to be around 10:35. 

My fellow runners and I drank half a beer for the novelty of it, then headed for food at Panera. 

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This Saturday I was due for 12 miles - eek. I did it. It wasn’t SO awful. I think my pace was 10:35 again. My legs were JELL-O. But man, it feels great when you’re done. I always follow the super long runs with chocolate coconut milk. Nom. 

Next week I’ll drop down to about 7 [short : ) ] 

Saturday Oct 10th is the Queen Bee Half! I’m excited and slightly nervous. My last half was the spring before I was pregnant with Hannah. 

I’m always thankful for a husband who supports me and lets me do this every weekend. Thanks Baby!

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... : )

Heart Love

A friend’s sister is becoming a Mom tomorrow and meeting her son. Her son will have three heart procedures within the first 4 years of his life. The first surgery will be this week. I’m happy to know her and be available for her. Just knowing someone who understands what you are going through is - in a way - comforting. I hope she knows there are a lot of us out there.

Family and friends are always supportive, but in all honesty, unless you’ve been through it, you cannot understand the emotions that come with a child whose heart needs repaired. [And in our case, an extra chromosome to boot!]

I know 1 in 100 babies will have a congenital heart defect. I think I know three people now who have had a somewhat similar journey as us, just in different heart-related forms.

I’m anxious for K and her baby boy this week, though I have the utmost confidence in the Cincy Children’s team and the strength of that baby boy. Through the Ds community, I now know many children who have had heart repairs. And let me tell you - they are strong. 

So this post is just to send my NICU and Heart Mama strength to her and the family. No one wants to have to go through this, but you find strength buried in places you weren’t aware of. It just comes to the surface because there is no other choice! 

And months or one year later you look back at those long days and weeks and realize “Wow, that feels like so long ago!” Look at us now : ) 

Good luck tomorrow, friends. You’ve got this!

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!

PRESCHOOOOOOL!

Ooohhhh snap. We’re here - clever, social little Nora is about to be unleashed to the world of education!

Nora goes two days: Tuesdays and Thursdays from 12:30-3pm. Our babysitter’s daughter is in the same class. Our sitter has a new van and it is filled with Hannah, two two-year olds, Nora and her two children - ! I went on the first day to take Nora and saw this magical dance of loading the kids happen. 

I took Nora because I felt it was important for one of her parents to be there despite the awkward time for parents who work outside the home.

We were told to drop off and not stick around; the kids will get hung up if Mom or Dad stick around too long! So Nora tried to play and buzz around while the other kids were playing with clay or blocks... I had to re-route her and gave her a huge hug and kiss... once she moved towards the play tables, I ducked out. 

No tears and uneventful which was good. 

That evening when Tim brought the girls home, Nora’s first day summary was, “Mommy I didn’t cry!” I’d say that’s a good day.

“Vacation” - i.e. My Week With the Girls

Our sitter took a vacation the week prior to Labor Day. So I had to take “vacation.” (Remember - Tim’s vacation is alllll gone) I clearly use quotes because we all know staying home with two small children is the opposite of vacation. It’s an unpaid J.O.B.

We loaded up the week with Hannah appointments, Nora’s pre-preschool meetings and playdates.

Monday Hannah breezed through her hearing test - woooo! She’ll have an eye exam in October which I’m nervous about - her left eye does turn in a lot, so I hope the worst case is just adorable baby glasses - ! She also needed bloodwork for her thyroid - ack. It was actually the least-intense blood draw I’ve had with her thus far : P

Tuesday Help Me Grow came out and fawned over how well Hannah is doing sitting and reaching. We just need to get those baby arms strong! Her toughest challenge will be going from a laying to sitting position on her own. Yikes! Hannah is doing better with food and drink - we think we’ve finally figured out she eats better with savory than sweet! 

Wednesday we had a playdate with a good friend... it went okay for the most part, but Nora not only did Nora pick on her own friend, but was a beast trying to leave. Reprimanding at a friend’s house basically meant leaving earlier than I wanted. Figuring out what what discipline works with Nora is a moving target... Age three is HARD.

Thursday my Mom came over and that felt like a vacation day; Target by myself? Danger! It was awesome.

Friday we had my coworker and her daughter over who is one week older than Nora. They’ve met before and got along great. Upon arrival, Nora asked if the little girl wanted to go play in her room and the little girl declined. Well, this was NOT the answer Nora wanted - the “no” answer basically set the tone for the short time they were here - ugh. Nora refused to play with her playmate on any account. It was brutal. I was so embarrassed, but you can’t punish a child for not wanting to befriend someone and get along. ACK! 

My week home was a mixed bag; I had really hard times and a lot of pure high times. I can truly say each night I went to bed, my head was calm and I felt un-stressed. I’m going to miss the sweet faces and am excited for our busy weekend ahead: our first Buddy Walk and Hannah’s 1st Birthday Bonanza! 

Taking Care of Yourself - or Lack Thereof

I think I’m the typical tale of the Mother who takes care of everyone but herself. Or at least I think Stephanie has described me that way once : )

I had typical post-partum hair loss after Nora. After Hannah, it started around month five I believe. My hair just stopped falling out [in clumps] about three weeks ago. About 6 months of losing my hair. And to get a little more personal - I had a skipped cycle which is unheard of unless I was pregnant [trust me, I’m not]. I was finally starting to worry about myself. I was very close to getting a thyroid lab [and haven’t ruled it out still].

As you all know, this was all happening during our awful winter of bumped surgery dates and a hernia surgery... I was at my lowest weight this past winter as well : (  Clearly life had caught up with me and it was all stress related. 

Thankfully my cycle came back and the clumps of hair in the shower have eased up. Running is the one thing I consistently do for myself; it’s not only my exercise, but my alone time, stress release and time to think. 

I don’t think I’ll ever really be un-stressed - ? Maybe just “less.” I love my little Hannah but a I will always be anxious for her.

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.