G-Tube Update [and Gait Training]

Today I’d taken off [sitter took day off] and Hannah had PT at 8am. We tried a second gait trainer that Hannah could touch the floor, but Hannah has no instinct to move her legs. The PT had to basically “walk” her feet for her to understand. She seemed a little weirded out by the whole thing - I’m only posting the one smiling photo I took. 

Hannah is wearing Nora’s first pair of walking shoes - which means they fit Nora around 12/13 months. Hannah is 19 months and the shoes kept falling off : )

We also had a weight check on Monday [hauling two kids around in the pouring rain is awesome!]. Hannah gained weight over the past six weeks, but not as much as they wanted. The Nutritionist wants her to gain 4-8g a day. Hannah averaged 2.55g/day. Mind you, this was the time period of the stomach bug - a week of Hannah not wanting to eat. 

“Are you adding sour cream, salad dressing, butter, cheese, oils, whole milk to all her foods?” Yes, for real. It feels like a false way to gain weight for a short term goal. Like a fad diet in reverse. Yeah, she can gain weight with terrible eating habits - anyone could! But this isn’t the long-term nutrition I want my child or anyone in my family following. Additionally, people with Down syndrome typically fight obesity due to the low muscle tone. I want our family’s eating habits to nix that.

The Nutritionalist agreed with all my points, but the plan won’t change. It just feels strange to me. Hannah’s not underweight. And once that g-tube comes out, I’ll need to adjust her diet to get all the added butter out. Gross. 

So as it stands, she still gets two tube-feedings a day and we’ll have another weight check in two months. I don’t forsee the tube coming out by age two, but maybe by the end of the year? THAT would be the best Xmas gift a Mother could receive!

Catch Up!

Gosh I’m not even sure what we’ve been doing the past few weeks...

We had a Down syndrome playdate almost three weeks ago now - it was nice... but it left me feeling blue. You know, the whole mobility thing. 

We’ve had a lot of fun playtime with lots of friends. 

There are SO many babies being born this year - it’s hard to keep up and keep track, but fun to see the additional babies or first time babies. 

First week of April [April already?!] we had PT and Hannah tried out a professional gait trainer. It was a little too tall for her, but we could tell she was itching to push off! We’ll be trying with a different gait trainer tomorrow, so I’ll be curious to see how it goes! 

Hannah also had PT with Help Me Grow [HMG] - her 18 month assessment. Everyone across the board has been happy with her progress [even though it’s hard for me to see]. Her core and legs are strong - we know her arms are not. She’s getting better at pushing herself up from the side-laying position. 

That swoopy hair just slays me! Hannah will have longer hair than Nora : )

Awww Doggie!

In Nora’s world, it’s just Robinhood. That’s it. Robinhood. I realized I had a box collection in the basement of old Disney books with read-along cassette tapes [who can play those anymore??]. 

[not my photo - swiped from Internet]

They were a hit. Mostly Robinhood. She carries that book everywhere, pretends she’s Maid Marian, etc, etc. Tim even went so far as to find a personal cassette player that also transfers the audio to MP3. I’m not sure how long it’s going to last, but it’s been a good two weeks - that’s a long grip for Nora. 

*Note - I had to throw away the Tar Baby book. She asked me to read it to her and I hesitated. I made my way through it, cautiously. I think Nora said “Tar Baby” once afterwards and that was enough for me to say “NOPE.” Not acceptable now days!!

Nora is playing “Mommy” heading to Kroger. With sunscreen on her face.

IF Nora stays in her room at night - for five nights - then she’ll get Robinhood.

I’ve never seen her brush Ailo. And we barely go out to eat. And she NOW dislikes mac-n-cheese [!!!].

Hannah Videos

Family walks on the weekend are so great - and the two-seated wagon is perfect until Big Sister wants to pull Little Sister.

Hannah is slowly getting the hang of signing. She blows kisses when we say “I love you.” She understands “Night-Night!” and rests her head on her hand. She can locate her nose, waves “Bye,” and supposedly signs “more” and “again” with our Sitter. She’s definitely making progress, yet it’s strange to think back to Nora at this age, talking clearly to us.

Hannah does say “Mama” and “Dada” and uses many vowels... she actually quite vocal, but this will not necessarily translate to clear speech later. I actually enjoy Speech Therapy now because we’ve graduated past eating and are now on actual communication. I enjoy learning sign language and being able to sit back and watch the therapist “play” with Hannah. Even Nora has been learning signs which is a treat : )

This 'N' That

Hannah is now sticking her finger in her nose. She’s not digging, I think it’s just a new sensation.

Thursday morning I got Nora’s outfit together for her preschool Easter Egg hunt. A cute patterned dress. Nora looked at it, threw it on the ground and said, “Mommy, this dress is too FANCY. Easter is about JESUS.” ... Wow. Noted. I got her a skirt instead.

We had a difficult evening with Nora this past Thursday... did you know Nora has a strong personality?? [sarcasm] She packed up her lunchbox and backpack and said she was going to Florida. Okay, girl. This photo shows what she packed in the lunchbox - you never know when you’ll need to shiv someone! 

I ran the Heart Mini ... three weeks ago now? A 15K [9.4 miles] - it’s my favorite distance because I don’t have to train “too” hard. I’d like to make it my yearly tradition since Hannah’s heart has been repaired and I know so many whose hearts are also repaired or struggled. Last year it was about 35˚ and I had a PR [personal record] of about 9:37 pace. This year was cloudy and about 60˚, however they scheduled it on Daylight Savings [!!!] and added a brutal 1/4 mile uphill. Everyone I talked to had a hard race. My pace was a minute slower than last year! I’m just glad the rain held out. 

Ailo turned seven on St. Patrick’s Day - we rescued him on St. Patty’s in 2010 : ) Still think we hit the jackpot with him; great with kids, easy-temperment, and a soft-cuddlebug. I’d clone him if I could!

And in super small house updates, Tim is swapping out the original, old beat up registers with new ones. Our living room paint color came with the house and you don’t really notice it during the day with sunshine. At night, with more lights on, it is GREEN. In a bad, not-calming way. Some day we’ll get around to re-painting it. 

DIY doesn’t happen anymore - a four-year-old who wants to help and taking care of the 18-mo old. It basically happens when one or both are sleeping now days!

I’ll admit, she watches more TV than she should, but her imagination and self-play is still fantastic.

Two birds with one stone!

Eating at our friend’s, the Sheehan’s house!

Ava + Nora

I love cooking. Fridays have become crockpot days for ease. However, adding a WHOLE box of pasta to the minestrone is NOT what the recipe called for, Christine!! DOH!

World Down Syndrome Day 2016!

Happy World Down Syndrome Day 2016!  [tomorrow, 3/21 - three copies of the 21st chromosome]

We had our WDSD 5K this morning at 10am - again, a cold day for the first day of Spring! Thankfully the sun was out and it was 34˚. Hannah stayed with Nana & Papa so she could get her tube feeding and stay warm. I’m certain next year she’ll attend : ) 

Hannah had loads of support! Grammy & Grandpa Batty, Aunt Stephanie, Aunt Katherine & Jeff, Great Aunt Suzanne & Uncle Randy, William & Evelyn, my friend/coworker Emily and her family and my coworker Brendan and his girlfriend Cheyenne - Thank you to all of you for supporting the Ds community! 

I came in second place in my age group - woot! I ran rather fast which I do during 5Ks. I think a 5K PR! Short race, therefore I don’t need to pace myself as much. 

Coworker Brendan + Girlfriend Cheyenne

Great friend + coworker Emily & family!

Supportive family & friends!

Here is a video to celebrate tomorrow by a worldwide advertising firm. It stars Olivia Wilde and really hits it; I don’t see Ds when I see Hannah. I see Hannah. I think everyone who is close to her agrees and understands now. She isn’t Down syndrome, she’s Hannah:

How Do You See Me?

Another great article by a mother whose son is a touch younger than Hannah. My favorite quote is, “I thought I was educated, but I had no idea how ignorant I was.” It’s true - I’m embarrassed at how much of a bubble I lived in prior to Hannah - no exposure to anyone differently-abled. She really has opened a new door of acceptance and patience I didn’t know about. 

News Anchor to Homemaker

What shocked me in this article was the antiquated information and delivery of their son’s diagnosis by the doctor. “He may never be able to feed himself.” “At best he’ll mop floors of a fast food restaurant someday.” “I don’t want you to feel like you have to be a hero here.” Absolutely unreal. He or she must have decades-old information that is no where close to what individuals with Ds accomplish now - clearly. 

I hope I don’t sound like a broken record... I really know now that Ds isn’t that big a deal. Yes, it will have its hurdles. I’ve learned you can try to plan your future but you only have so much control over it - like they say, you can only control how you react. And my reaction is to be the biggest cheerleader for my daughter I can. 

Hannah, you are pure sunshine. Well, and maybe some cranky clouds now and then : ) 

Photos and Frustration

First are some photos from some fun friend playtime; meeting babies Llewyn and Ewan! 

That’s a lot of kids! Big Sis Evelyn, Tim is holding Evelyn’s brother, Ewan. Ellie wanted to join us, too!

Mr. Ken holds Ewan with the girls!

Daddy William with Ewan, Daddy Chris with Llewyn.

This past Saturday was Hannah’s birth group playdate. Just her and I went for the hour. It’s always nice connecting with the other families; talking about our therapies and hurdles. Then I became a bit sad. Hannah is the only kid not on the move. A lot of the kids are about to turn two - they all had their ankle supports and toddling around. Most other kids were at least crawling over everything. Even the kids younger than Hannah. It broke my heart. 

I’ve been down about her lack of mobility since seeing her peers; are we not working her enough? Is she ever going to move? I have slight guilt for working. If one of us stayed home like every other Mom in our group, would she be moving by now? Is our sitter doing enough with her? I’m pretty down about it. “She’ll get there.” Will she? I know about 3-year olds with Ds who don’t walk. I don’t want to get to that point. Seeing your child SO behind even her Ds peers is crushing. I’m trying to focus on all the good we have, because we have a lot of it.

Hannah, Wyatt, and Bea. Wyatt also has a g-tube so his Mom and I converse a lot!

*“Well Christine, why don’t you just stay home?” Easily said, right? Then we’d be living in an apartment, have to find new insurance, struggle to pay our own bills, etc. We’d probably have to give Ailo away... you get the picture?

Not every family has the option for someone to stay home. Some women also enjoy working outside the home. Also, why aren’t men called “Working Dads?”Also read a great quote from Emily Henderson “...men should lean OUT instead of women leaning IN.” Right on, Sister. Sorry about the tangent!

Sad in the Community

Joey Feek passed away today.

I found her/their family through random internet searches when I had Hannah - another family who had a [birth] diagnosis of Ds for their daughter, Indy.

I’ve posted about the family before... I think the combination of being close to my age with a daughter close to Hannah’s age. Knowing how much work and support we put into Hannah’s development - I think that’s what jabs me the most. Little Indy needing her Mommy as she grows and develops... but I can tell they have a rich village who supports and surrounds them.

I literally cried tonight on the couch when I found out - over a stranger! Tim was probably shocked seeing me cry out of the blue. 

I’m happy she fought long enough to see her daughter’s 2nd birthday. 

I’ll keep following them to watch that fun little girl grow.

*Also – I purposely avoid topics/books/movies that I know will make me cry. So don’t clink the link unless you get fulfillment out of waves of emotion:

 One Last Kiss

The R-Word

I’ve never liked the R-word. Retarded. It’s clearly meant to be negative, even if not being directed towards a person.

I’ll admit I’ve used it in the past. Then I grew up and realized it simply sounds impolite and rude. 

Then, lo and behold, I have a child with Ds. I have grown a bit sensitive now; Hannah’s delays and perceptions about her. I’ve heard or read grown adults using the word since I’ve had her and it pierces my heart. You are an educated adult - you really can’t come up with a better word? 

I’ve been having a hard time collecting my thoughts about the word and finally found this brief written piece by another mother that sums up my thoughts very well:

Why the R-Word is not “Just A Word”

Our Horrible, Terrible, No Good, Very Bad Weekend

Oh you guys. The stomach bug. No messing around.

Somewhere, somehow it hitched onto Hannah and started there Thursday night. 

We’d gone to bed at 10pm. 11pm Hannah starts crying. Tim tried to soothe her, then I went in to try. As I sat her up in my lap - BLAT! Over her, me, and Tickle Me Elmo. After cleaning everyone up, we all settled back down around 12am. 

Friday AM, she threw up some more while Tim tried to feed her. I wasn’t sure if it was a stomach bug because we’d taken her off her reflux meds - and that reaction can be rough. But when Tim said she wouldn’t hold liquid down, I knew it was probably the stomach bug. 

Friday Hannah spent half the day with Tim, half the day with Nana here. [Nana we apologize and feel terrible for exposing you : ( ] 

Friday night, went to bed... 2:30am Nora walks in “Mommy my head and belly hurt.” She crawled into our bed, and as I lifted her out - BLAT! Over me, her, and our bed. Sigh. She was still in surprising good spirits as I gave her a bath at 2:35am on a Friday night. She went back to bed as Tim and I stripped our bed and find extra bedding for ourselves. I didn’t fall back asleep until 4am. 6am: “Mommy! I spit up on my pillow!” She did - thankfully just a small amount. Also thankfully, we all slept another hour or so. 

Saturday Nora was okay - not hungry, but drinking fluids. I ran out to Target and Kroger to get weekly needs. I was feeling off. 

Nora napping on the floor Saturday - 11am

I got home and I slowly went downhill. I napped from 2-3pm. I was nauseous all afternoon, waves of it. Finally at 5:30pm it culminated to an epic bathroom run. Ugh - I forgot what it’s like to get sick from a virus - violent and terrible. 

Tim put the girls to bed, I went down at 7:30pm. Slept until 5:45am when Nora got up to go bathroom. She started hoovering food right away. 

I was weak Sunday AM from not eating, but felt better - I immediately started drinking tea and toast to get my energy back in case Tim fell. Which he partly did... he never vomited like the rest of us. 

The juxtaposition of a sick baby; snuggles.

You know how I Nora is better? She’s chewing on AILO'S DOG TOY.

Nora and I managed a half hour outside this evening. I was so upset our entire weekend was wasted - it was so nice outside. 

Now there’s a beautiful thing!

It was amazing how quickly Nora bounced back. Hannah, however, still has not. No appetite since Thursday. Has been laying her head on everyone, constantly wants to be held. Just not herself still. Breaks my heart to see her so lethargic. 

Hopefully we don’t have to deal with that for a long time - BLAT!

One of Them Days

Today Hannah had a 7:30 EKG and a follow up with her Cardiologist, Dr. Kimball. Everyone was out of the house by 6:30am. Zzz.

Like I’ve said, EKGs are easy - just some stickers everywhere with clips that read her heart [?]. I should be more educated on it by now, shouldn’t I?

*Edit: EKG is the process of recording the electrical activity of the heart over a period of time using electrodes placed on a patient's body. These electrodes detect the tiny electrical changes on the skin that arise from the heart muscle depolarizing during each heartbeat.


Hannah did great [other than being a super-wiggly 17-mo old]. She has minor leakage with her valves which is expected after her surgery - it’s of no concern unless it gets worse which Kimball does not anticipate.

Oh look, the g-tube is IN.

Tim took Hannah back to sitter and I drove 2 miles down to my office. 

Around 12pm I got the call from our sitter we’ve been waiting 17 months for; Hannah’s g-tube came out. !@#$%^&* This actually isn’t uncommon; kids can pull them out, balloon deteriorates, etc. 

I guess Alison was tube feeding Hannah, her guess is she was pushing to hard and pressure built up that made it pop out? The g-tube was still inflated when it came out! The hole is maybe the tip of my pinky finger. Somehow it came out and Hannah didn’t even cry or react - ?! 

Either way, I’m incredibly happy I have a Mother-In-Law who lives close by. Dottie met me at our house. Alison had just taped some gauze over Hannah’s hole and had to get the big kids to preschool, then came to give us Hannah. 

The whole ordeal lasted under 1 hour - but given too much time, that hole could have closed up and thank the powers above it did not. Hannah cried pretty hard as Dottie made a few tries to get it back through. She gets over it quickly though. 

*Dottie once again - thank you for saving our butts and being there for us! 

And on a more fun, cute note: Hannah has learned to blow kisses thanks to Daddy!