A Trick Turned Treat: Goodbye, G-Tube

Halloween Day, 10:30am: Sitter calls - the tube has popped out again. Nnnngggghhhhh!!! [fists raised to the sky]

I race to her house to get it back in before she has to leave and get girls from preschool. 

I get there around 11am, wash my hands, get the new tube and try - forcefully - to push it back in for a few rounds. It’s not happening - the hole has closed UP. It may have been 45 minutes from the moment Jacob [Alison’s son] walked up to her, g-tube in hand; “Look Mommy!” Ack. That’s how quickly those holes close up. 

I stepped outside to call Tim. In tears. The tube was “supposed” to be in through flu season as a safety net. Tim felt we had to get to the ER. 

I took Hannah and headed to Bethesda North about 15 minutes away - the closest ER. 

On my way, I was a bad driver and used my phone to look up our G.I. clinic and called to see if I could reach Hannah’s doctor or his nurse practitioner. The most immediate person to respond was another NP, but not ours. She looked over Hannah’s history. Based on just her record, this NP suggested we get it back in to be safe during flu season. She also said Bethesda would have no idea how to get a g-tube back in and to head to Children’s Liberty Twp Campus. Sigh. 

I headed onward and not a minute later the NP called back and had talked to OUR NP who knows Hannah and our history said we did NOT have to put the tube back in!! I literally and loudly said, “Oh come ON you guys!” The [not our] NP laughed and confirmed it was basically up to Tim and I at this point.

I was still driving towards the ER, calling Tim as we talked it out. We were on the same page; while the tube was definitely intended to stay as a safety net, we really weren’t using it. Hannah eats very well and is drinking more fluids now. IF she caught the flu and became dehydrated, she would just go to the hospital like any other child. 

I looped back to Alison’s to drop Hannah off and go back to work. Just like that. 70 minutes after the initial call. Two hours of driving around the Tri-State making calls like a mad woman while Hannah just bopped around in her carseat. 

We’re just washing with warm soap and water and covering with gauze. Some spots leak after tubes are removed, but Hannah’s body has shown it will close well, I think. 

The only lingering frustration is that our NP said we still need to do weigh-ins. Gaaaahhhh! I guess I can’t complain - we accidentally avoided another Children’s bill with our lost March 2017 appointment now : ) 

So this evening while Tim took the girls trick-or-treating, I cleaned up the area on the counter where all of Hannah’s accessories sat; breast pump parts, tubes, bottles... and now that spot is clear. For the first time since September of 2014. Just over two years after Hannah arrived - not even realizing a feeding tube was part of the plan. 

December 2014

October 31, 2016

A wave of various emotions ran over me - what a journey. That feeding tube has been the cause of most of my anxiousness the past two years. And now... it’s just - out. So much of our energy went into those tube feeds. I can’t believe it’s done even though we haven’t even been using it! 

So an accidental trick turned into a treat - I guess? 

Happy Halloween : ) 

Mr. Dom Dom

This kid. Seriously, whose is she?

I think I was putting Hannah down for a nap so missed the onset. 

I think Tim was painting a door just outside, so was close to Nora, however that won’t stop her from expressing her inner creativity. 

The video just speaks for itself. 

Annual Family Cabin

Our annual family cabin trip! Since 2013!

This year we found a place in Goshen - which is less than 10 miles from our house. Haha! It was great though - it didn’t feel like we were just down the road. 

The property was super cool - the house was bizarrely unique. Very cabin-y and eclectic.

Plenty of room - we each nearly had a “wing.” The weather was perfect - the kids were able to go outside while monitored next to the pond. Adults could be outside with a fire.

What was unexpected - the absolute awful TWO nights we had with Hannah. We all shared a room - which was not a big deal. We did it in the hotel in Indy with no trouble. Not sure what gave. We can only deduce that Hannah knew we were sleeping in the same room together, therefore decided that she would wake up all night, only to be somewhat soothed by sleeping between Tim and I in a full-size bed. It. Was. Awful. And this was after our weeks of sickness and sleepless night already. 

Amazingly Nora slept through it all in her sleeping bag. 

Despite my sleepless, sad eyes, it was fun. Although hopefully next time Hannah will sleep better b.c she won’t be in a pack-n-play. 

Miss Emma helped the girls make a fairy house - it was adorable!

Lords, Ladies and Foxes

Backing up!

Went to the Ren Fest back on Sept 25th with friends - we thought with her love of Robin Hood, Nora would love it - she did! I think after almost two hours she became overwhelmed though. And Hannah fell asleep in her stroller. Nice time overall!

Little Ewan! 

The two big sisters enjoying the Beowolf mudshow with Miss Emma.

Joust!

Too much mead & turkey legs.

Not sure if I’ve mentioned what Nora wanted to be for Halloween. Robin Hood. She threw me. It was originally going to be Princess Aurora [Sleeping Beauty] but pivoted on me. Challenge accepted! Found a pretty good [not exact] hat at Cappel’s - our home town’s Halloween store. A coworker lent us the fox mask. I found a women’s small green polo that we will cinch with Nora’s own belt. Then we’ll fashion some sort of bow and arrow from what’s in our yard and house!

Nora went to her friend’s for a birthday party [our sitter] - and was asked if she wanted to spend the night - ! Whoa. So since they are one mile away and we know them well, we said “Sure!” It went very smoothly.

This was Nora's costume at age two. Awww!

Queen Bee - Flying Slow

I’m super behind on everything going on! 

I ran the Queen Bee on Oct 8. An all-female race though men are allowed to run [and start behind the women].

Nearly our same crew as last year. The gals I ran with all claimed to be “under-trained.” I felt trained, but I’ve become extremely slow - my typical pace is around 10:20 and lately I’m anywhere from 11:00-11:38 on my last 12-mile run. 

I felt good starting the race and for the first half tried to keep up with my friend and her sister... which I knew wasn’t smart. I ran too fast the first 6 miles. Then I fell behind them to my own 11:00 pace. 

Then I drug. Each mile my legs felt heavier. I’m just glad I never walked. All my “under-trained” friends finished a good bit before me. 

I did not strength train like I said I would. Doing squats and lunges at 8:30pm after dinner, baths, bedtime, dishes and packing lunches isn’t easy to get the energy for. 

I also had that never-ending cough and strained chest muscle. 

I also think those 5am runs were hurting me - it was SO early and I was not running fast. I did my three miles last night at 7:30 and guess what? My pace was 10:22. Of course. 

SO I think I’ve identified what to change moving forward if I want to maintain good races. 

Either way, still fun... I think : )

For those who aren’t familiar - photographers are everywhere at these races - which is fun at the beginning and super annoying at the finish line - because I felt like trash - I actually look better than I felt which is good - haha! Anyway, then they track your information down and try and get you to pay $30 for a picture of yourself looking worn down. Hm.

It’s Potty Time!

As you should all know by now, children with Ds develop slower than their typical peers. 

This includes... potty training.

Looking back, training with Nora wasn’t too bad - we just went full in with the undies and dealt with the accidents. Nora was cool with learning, didn’t fight it. 

I’ve been nervous with Hannah - I knew we would delay starting. But she’s now two. She’s close to walking... it’s worth trying out - right? What’s also hard is the communication. Nora was easily talking to us by 16 months so that helped tremendously. Hannah... we’re going to have to sign - which has been good, I hope we can communicate the potty training!

I’ve heard of some children being trained as late as five or six years old - yikes. I really hope Hannah can master before that. From what I’ve read, the average is three to five years. I hope we can be on the lower end of that...

We brought up the little potty and I sat her on it this past weekend while Nora was on the big potty. Hannah freaked out a bit as if to say “Mom what are you doing?? Get me off of here!!” So I took her off. 

Fast forward to today when I saw a missed call from Alison [panic!] - but then saw a text from her: Hannah pee-peed on the potty! WHAT?! I guess Alison just gave it a shot - Hannah freaked out again. Alison calmed her down and at that point, Hannah peed! Zowie!

We plan to keep it up, even if today was a fluke, at least she now has the first step to learn! 

Ds Awareness Month

October is Ds awareness month - not sure why this particular month, but let’s keep going...

Last year I’d posted something on Facebook every day of the month [sorry blog] - this year, just here and there when I have time.

I read this article by another Mom which wrapped up my thoughts and feelings very well. 

Down’s Syndrome: A Disaster?
(Mind you, she’s not from North America, therefore uses “Down’s”)

Down syndrome is not a “severe disability” nor “incompatible with life.” Perhaps a little different than expected, a few challenges, and lots of unknowns. 

We can’t predict our typical kids’ futures either. Many typical kids can have speech difficulties, heart defects, walk later, tube fed, live with you as an adult… but why is Down syndrome seen as such a disaster?? Granted, I had the same “disasterous” thoughts when we learned Hannah’s diagnosis... but I chalk it up to being uninformed and uneducated.

With more access to NIPTs [non invasive pregnancy tests], it makes me sad that the Ds community could diminish. We should be careful what this society sees as “perfect.” We all have a contribution to make. We all have different abilities. 

Our friends who spend time with us (I think) can attest that we’re still the same family they knew before having Hannah. Our hurdles are now blips on our radar. If anything has changed us, it was simply having a SECOND child.

“Until you’ve lived in a certain situation, or with a child or adult with Down’s Syndrome, you can’t really imagine what it’s like. You project what you imagine it to be like. Fear of the unknown will almost certainly play a part… Families ADAPT and are genuinely and properly enjoying life.”