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.

Hannah Updates!

Gross Motor Skills:

Well Hannah is straight up sitting now - before her first birthday! Yaaaayyy! Reaching this milestone is so awesome! I can’t sit her down and leave the room just yet, but girlfriend can stay up for a long time. 

We’re now working: 1. having her reach for toys at her sides to work her lateral core strength [check!] and 2. arm strength. Hannah can’t yet support herself with her arms while on her tummy, so we help her out and do exercises on adult exercise balls. 

I can tell she’s starting to support herself, but, again, it could be a bit of a long road. Arm strength is the next step to crawling. Hannah already pulls her knees up underneath her, we just need to put the pieces together. Today I had her arms up and she pulled her knees below and got MAD! I’m not sure which part hurt or was just too much work - ??

Fine Motor Skills/Eating:

Hannah had already started to grab and eat Baby Mum Mums which are awesome - just large, flat rice crackers that are easy to grip and melt in her mouth. She is now grabbing puffs and eats them whole. She can’t do a pincher grip, but rather palms them : )  Her chewing actions are really good. The bits of fruit/veggies seem to do well and the purees are still pushed out... I’ll be talking to Speech Therapy about these strange differences...

We continue to have speech therapy appointments... no one seems overly concerned - still - and this lesson in patience is a long one. How long will my baby get her nutrition through a tube? I imagine a year down the road if she’s still tube-fed and we can’t hire a babysitter because she’s tube-fed ... : (

Nutrition:

Lordy me. Typically babies would be off bottles and eating food by now. We have not achieved that. Yet formula is now behind us... Next step? We’re starting on Pediasure... First, it’s more expensive per serving than formula. Second, it’s a straight up milkshake with added nutrients. Granted, I know formula isn’t awesome. The first ingredient is brown rice syrup [sugar]. Pediasure is: water, sugar, etc. Ugh. I know my baby can’t eat, but I’m tired of giving her yucky nutrients. 

First, the Cardiology Nutritionist asked HOW we were getting our formula. “Um, Kroger?” She said she thinks we could have had some of it covered by insurance since it’s a medical need. GREAT - thanks for letting me know that eleven months ago! This Nutritionalist is new, so now she’s going to look into getting our Pediasure covered... fingers crossed: a 6-pack is $12 and Hannah would “consume” about 3 a day - !! 

On the side, I’ve asked about a whole-food option. There is; we have to be referred to the Feeding Team at Children’s. It’s a recipe of whole foods plus sugar, oil, etc. It’s obviously more work, but I just want Hannah to get real food. On top of this, I need to call our insurance to see if they’ll cover a blender - ! We don’t have one and if formula could HAVE been covered, I’d think a blender could be for medical purposes. 

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So things are going very well here... Hannah is doing great and it’s just continuing her therapies... She’s doing great!

Milestone Nearly Reached!

Tonight after dinner, Tim had Hannah on the floor and was practicing her sitting... she sat unassisted for about five minutes!! Yay Hannaahhhh! 

It’s so interesting experiencing a typical baby’s milestones versus a baby who is a bit delayed; what you took for granted now feels like an even bigger deal with Hannah. I try not to keep tabs on the typical babies her age who are already standing and walking... I mean, that was Nora! We are taking huge pleasure in Hannah as her own person today.

In addition, she’s started to really get the hang of “chewing” - she’s swallowing more food bits. My Mom had the girls this past weekend and even she noticed the difference. 

I really have to hand it to my amazing babysitter - without her and her kind/open heart and dedication to our girls, I’m convinced Hannah wouldn’t be nearly this far along. 

Perhaps she’ll meet our “goal” of really sitting by one year old : )

*Also, these photos show the chaos of a weekday post-dinner blur. Literally.

Words & Language

Sticks and stones? Sometimes words can sting.

I feel like I’ve written about this before, but those words/language have been popping up again.

I’ve caught a few of our medical professionals lately saying the term “Down’s babies” or peers who say the same phrase. It rubs me the wrong way. I’m still not sure whether to correct people or not. The medical professionals are who surprise me most - I just assumed they were trained in people-first language - ?!

Most of the community in North America winces a bit at “Downs baby/kid.” Would you call someone an “ADHD baby” or an “Autistic kid?” Probably not - they are still a baby/child - with a name! - who happens to have a condition. Like I’ve said; conditions do not define a person. It is a characteristic.

I’ve also read literature about “our kids with disabilities”... I know Hannah will learn gross motor skills a bit slower and may not be cognitively up to speed with her peers, but I truly don’t see her as “disabled.” She’s very able-bodied, just taking a bit longer to hold her head up, roll, and sit. 

I’ve mentioned before that the words “normal” and “healthy” have a new meaning to me. “I just want the baby to be healthy.” You mean without Ds or an organ defect like my baby? Shoot, I know I’ve said the exact same thing. I listen to people say, “Thankfully the baby didn’t have a genetic disorder...” My immediate thought is, “What - thank goodness that baby isn’t like my Hannah? Is Hannah NOT normal or healthy?” I can’t help it - Mama Bear bristling and protective of her baby. But I do know; everyone wants a “healthy” child. No one wants their child to have a condition to hold them back. 

I know intentions are never bad, nor directed. It’s just hard not to be sensitive to certain words and phrases that have underlying meanings. Though I’m sure most times people don’t realize it. I try not to be overly sensitive and don’t want people walking on eggshells with their words. I think Tim is probably way better at shrugging it off than I am. 

I also sometimes find myself with slight resentment - ugh : (  I hate it. I don’t want to feel that way. Not even from the Ds diagnosis - it’s more from not being able to really hold/snuggle for those first 17 days, not being able to nurse for medical reasons... All those picture-perfect images you imagine and see with a newborn. Those moments I gratefully did experience with Nora. 

We’ll have constant hurdles for Hannah. Eating. Walking. Schools... ugh, I can’t even think about the schools yet...

Well that was some rambling, eh? Sometimes you just need your train of thoughts out! 

I do have an awesome life! And so does Hannah, Nora, Tim AND Ailo! : )

Follow-up Echo: Post Heart Repair

Tuesday we had Hannah’s post-surgery sedated echo. This has been I think her 4th echo, 2nd sedated. The morning went very smooth and we were out earlier than we thought - win!

The anesthesia was given through her G-tube and she was asleep under 10 minutes. It was during her nap time, so that probably helped a bit. 

Waiting around 7:30am!

Again, the trippy lights to help kids asleep - !

More trips lights and calming “fishbowl” on TV.

While Hannah was asleep, I asked the sonographer and RN about her chest because its healed up a bit pigeon-chested, sticking out a bit. They both looked at me like I was silly - ! “Oh she looks great! We almost couldn’t tell she’d had a repair. We’ve seen kids heal much worse.” - ! Okay, well that eases my mind a bit. 

EKG while she was still asleep. Those are fast and easy.

You can’t leave the room until you force your child awake - ugh! The nurse SAT Hannah up and was tickling her neck, etc. I realize it’s for safety reasons, but who wants to wake a sleeping baby?? She woke up and acted like a drunk baby. Not kidding - it was funny/weird.

We made our way into an exam room to follow-up with Hannah’s Cardiologist. Nutrition came in first because I’m just not sure about Hannah’s “diet” - All. Formula. We’ve had two more speech therapy appointments with some slight tricks. We’re using puffs, thickened purees, Baby Mum Mums and yogurt melts. Anything and everything. Basically Hannah is pushing everything out with her tongue - she hasn’t learned to push food back and down. Everyone keeps saying “It will click...” It’s been 3 months of practicing. Talk about a lesson in patience for one of life’s most necessary skills : (

I digress - Hannah’s Cardiologist said Hannah’s heart looks great and we can come off her final medicine [blood pressure] next week! Woo - hoo! One less thing! We won’t need to see him again for 6 months - that’s a long time based on Hannah’s history. 

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In more fun Hannah news, she’s crazy rolling now, pushing her butt into the air while on her back and babbling a lot - we’ve got some “Da-Das” - yay! Her core is getting stronger so we’re not sitting yet but we’ll see if we make our 1-year goal : P