Hannah Updates

Nothing major, but one really fun thing: Hannah is clapping and waving! We’ll have to attempt to get video.

Hannah is doing very well with balance and inches closer to sitting on her own. However, our Help Me Grow physical therapist wants us to get BACK to tummy time now and work on keeping her legs together [instead of “frogging” apart] - helping her hips work properly will help with crawling and walking in the future.

Solids are still a work in progress. Hannah ingests some, but still lots of pushing it out with her tongue and raspberry-ing it out. We’re also working on tiny bits of puffs and whole foods like tiny bits of fruit. If it hits the back middle of her tongue she gags, so I shove it to the side of her mouth and she’s chewing it.

I don’t see the g-tube coming out anytime soon - once Hannah eats orally, then we can finally be rid of it. Until then, all her nutrition is formula : (

One of Hannah’s birth group friends dropped off a very nice gift - a small, low table for her to practice sitting/arm support. They use these at physical therapy but cost an exorbitant amount of money. Thomas’ uncle made a load of these and the family was generous to offer Hannah one!

Nora's Intense Week

So two Mondays ago Nora grumpily did not want to get dressed to leave the house. Who can blame her, right? As a typical 3.5 year old, she kicked and yelled and thrashed while Tim patiently [I hope] waited for her to get it out. 

Almost immediately, girlfriend started limping. Great. We let it go for a bit because we assumed she strained it a big while being difficult. 

We approach Friday to leave for a family weekend in Indiana [an entirely different post to come] and she is still limping. There was no swelling. She mentions her leg hurting here and there. On her thigh and hip. 

We go on our family trip [yada yada yada] and she’s still limping. We hadn’t done anything until this point because a lot of times you all know you head to the pediatrician and they tell you to keep an eye on things and shove medicine down their throat : P

So Monday afternoon Tim took Nora to the pediatrician and they recommended an X-ray. GAH! So at 6:11pm I left the house with Nora to head to Mason [about 15 minutes North] to a Children’s Hospital branch up there. It was thankfully very empty. 

Nora was nervous and asking questions. “Am I getting an x-ray?” I tried to just tell her she was getting a picture taken because for some reason the idea of an x-ray made her nervous. 

She was very nervous, but not scared, in the x-ray room. Lucky for me, I’ve done it 3X with Hannah [!] so I knew what we were doing. “Look Mommy gets to wear a big vest!” “Ooo what a huge camera!” I basically tried to make it FUN. 

She did awesome and got a sticker and looked at her x-rays right away. The x-ray showed nothing to the naked eye. We were home by 7:15pm - whew!

The next day the pediatrician called me; Nora had fluid on her hip joint. It could be a handful of things, so they wanted to get labs [aka bloodwork] to see if there was inflammation. Worst case; if there was a lot of inflammation, it could mean reactive arthritis. * cue my stomach dropping * I can handle one child with therapies, please not two.

I took Nora the next day to head to yet another branch of Cincy Children’s at Eastgate - the same place Hannah and I frequent for lab work and her audio test. Fun times! Wheeee! 

I was dreading bloodwork with Nora. It’s one thing when a 9-month old doesn’t know what’s going on. My clever 3.5 year old knows what’s happening. Nora asked if she was getting a shot.... I didn’t want to lie to her. I said “Kind of.” I held her in my lap and tried my best to distract her with videos on my phone. Nora watched the medic get all her tools prepped... She told Nora, “Don’t look!” Really woman?! 

Nora watched the entire thing; needle in, draw, etc. She cried hard. She cried a cry I haven’t heard from her before: a scared cry. It shattered me. I still say it was successful because she sat STILL and the blood was collected. 

I let her watch videos on the drive home, I gave her marshmallows as part of her dinner, I let her watch TV after dinner. I think by that point she’d stopped being sad and angry at me. 

I’m pretty certain she’s permanently scarred for life from that blood draw. 

Wednesday I waited for the next phone call - what the labs would show; and thank you, Big Baby Jesus, her bloodwork was clear. My gut told me her hip was just strained... Very thankful this week.

My Other Full Time Job

Now that I’ve been part of the Ds community for a year now, I agree - one of the hardest parts of having a child with Ds is simply public perception. I was one of those people who didn’t know either until I took the time to learn. 

Simply educating people is half the battle. 

“The hardest thing about having a child with Down syndrome isn't the child and it isn't the Down syndrome -- it's public perception. It's a lack of funding, resources and research. It's having to fight just to get your child an education and therapies. It's battling ignorance, and it's a full-time job.”

My “Down’s Kid”

Nine. Months. Pumping.

I’m free. Yet with a touch of sadness. 

I wasn’t sure why I felt slightly sad to end exclusive pumping after over nine months. I finally realized it’s because Hannah - developmentally - is more like a 5-month old; not sitting on her own, isn’t eating much solids, nor drinking from a sippy cup. All this adds up to me feeling a bit guilty drying myself up. 

I know I did a great job - longer and more volume than Nora received, so I am proud of what Hannah received. 

I feel like I’ve been pumping for so long, yet *bam* here I am in the blink of an eye, done! 

My goal had been 6 months/ when Hannah got through surgery. I look back now and am glad her surgery was pushed to 8 months, which pushed me further than I planned on. Hannah has so much stacked against her physically and cognitively; I just want to give her the best I can... 

On the bright side: Freeeeeeedom! Less parts washing! My nightstand is empty again! 

Really - only half of this disappeared; we still need bottles and tube feeding : )

Goodbye black bag!

I mean...

Model Babies!

I saw this article and cannot stand how adorable this toddler is. I mean, Hannah rivals this cutie, but I’m her Mama and I’m biased : ) 

Adorable!

Ramping Up and Slowing Down

Some positive lifestyle shifts in my schedule this week. 

First: Tuesday AM I woke up at 5:10am [!] to pump and then hit the pavement at 5:25am. It wasn’t as hard as I thought since I wake so early anyway. Running before the sun rises is pretty fantastic; no cars, stillness, quiet. It sounds hokey, but even the scents in the air were fantastic: flora and fauna and woody smoke scents. I was actually surprised I didn’t run into any woodland creatures! I ran 3 miles and the sky was brightening when I got back just before 6am. 

AND we all got out of the house at our normal time.

I can get used to that.

Second: Today I did NOT bring my pump to work. You guys, it was pretty awesome. I only took two bags to work instead of three, and my day was not interrupted with the rhythmic sounds of the milk machine. I’m down to waking up and before bedtime. One and a half weeks left. Then I can wear dresses again! 

Summer is going to be just lovely : )

Thankfully I’ve never needed to talk on the phone while pumping - !

Nora: The Threenager

It’s amazing how 3 years and [almost] 6 months is so different than just 3 years... The term “threenager” is incredibly accurate for her vocabulary and behavior. And I think most Moms would agree with me - age 2 was easy. Age 3? Hang on tight.

The tantrums are receding a bit... they’ll rear their ugly head now and then, usually because TV or phone time is over. We’re weak and we need to get the dishes done, what can I say?

Our family is amazed at her language, vocabulary, and communication:

“So are you thinking what I’m thinking?”
“Mommy, I made an innovation.” What word did you just use??

Nora hates being woken up on weekdays [who doesn’t] - “Leave me alone!” 

She does not like when my hair is in a ponytail. Huh? 

I saw a mini version of myself this past week at bedtime. Instead of reading books, Nora decided she was going to take all her clothes out of her two drawers and re-fold everything - !! Um, Hi, Little Christine. I just laid on her bed and watched her for a good 10-15 minutes while she quietly focused on folding and rolling all her clothes back into her drawers. 

Nora is a lot of what I didn’t expect my daughter to be; theatrical, super social, and overly gender-specific; i.e. loves pink and purple and princesses. Uck. But as parents know, we love our children no matter what their current moods and likes are.

My wish is that she loves math and science. Really. The opposite of graphic design. I’m an idealist for my children - I want them to make a difference.

We’ve been filling out her pre-school packet this week. It’s pretty bonkers that we’re at this point. I think it’s interesting that people may not realize pre-school is not a pre-requisite for kindergarten. In fact, the main reason we’re enrolling Nora is for social reasons. She actually knows letters, colors, shapes, etc. I just want her to have a larger social experience beyond the sitter’s house. 

I love watching her grow up and develop a rich personality that is and is not like us. She really is her own little self and man, is it something else - hard to put into words, really. 

*Edit - Tim confirmed my comparison of Nora to Mary Katherine Gallagher - a Molly Shannon character from SNL. This is how I sum up Nora.

A bit like Nora's personality

Show and Tell

Just wanted to share a great video and article I saw today - seeing how Hannah could grow up with all these role models. It feels familiar to see women with small babies with Ds as well. The mother of Logan also wrote a great article. A quote that didn’t make her article:

“People with Down syndrome are just that. They’re people first. Down syndrome is a trait they have. Much like a person has blonde hair. It’s part of him. But it does not define him.”

Anyone else catch the lovely young girl whose name is also Hannah? : ) 

People With Down syndrome Speak Out

Stop and Smell the Roses

3 Weeks Ago...

I can’t believe we’ve over 3 weeks past Hannah’s surgery.

Waiting felt like a lifetime. Then she was repaired, out, home, and now even that feels like quite a while back!

We had Hannah’s two week follow-up this week. She had a chest x-ray which she hates; I think due to the cold, hard surface and me having to restrain her arms : (  I got anxious from her crying since instructions were to not let her go too long as to overstress her heart - !

She had an EKG which is easy peasy. And thankfully the echocardiogram was cancelled since she just had that annoyingly full one just before discharge. 

Her cardiologist said she’s looking great - yay! Hannah came off her Lasix [which took fluid away from her heart/lungs] and will continue her Epaned [her one chamber still has a bit high pressure] until her next appointment in two months. At that appointment, she’ll also have a sedated echo [boo] to get a really good look one more time.

Dr. Kimball also let us know that we can let Hannah cry at night as long as we feel fit - she’ll be fine. Whew! So now we won’t jump every time Hannah cries and she can re-learn to soothe herself! 

Hannah also had a Help Me Grow appointment this week. The physical therapist said Hannah is doing fantastic despite the surgery setback. She’s already trying to roll onto her tummy [no-no for 4 more weeks] and wants to sit up... My goal for her is to sit on her own by 1-year old. We’re gonna work hard!

Loves Mama’s hair and earrings!

One Year Ago...

One year ago today [I think it was a Friday] I left a Level 2 ultrasound sobbing. Our baby girl had a list of “abnormalities” that included possible Down syndrome. Tim and I thought our lives were over, we’d go broke, and one of us would have to quit our jobs to help our baby girl. 

The rug was pulled out from underneath us and our expectations were shattered. I didn’t understand why it happened to us: I ate right, exercised, and was so healthy. I saw our neighbor smoking at 8 months pregnant and it made my head explode. 

Fast forward one year and two surgeries later and guess what - none of that happened. In fact, life is “normal!” Our daughter - who happens to have Ds/and is not a “Downs baby” - babbles, grabs my hair, her feet, chews her hands, and is really, really happy. 

The past year has been incredibly trying - difficult, but not impossible. We still spend a lot of time at Children’s and I see so many children who have a very rough time - particularly in the children who are dealing with cancer, etc. It will always give you perspective.

To you or anyone you know who may have a similar journey - Ds is not a handcuff or shackle. Hannah has opened our eyes to acceptance, patience, and has given us new perspective. She is our little warrior full of sunshine.

We are all more alike than different.