Holiday Summary

Our holidays were fairly uneventful... Christmas was below average in that Tim had a sinus infection with stomach cramps due to too much Alka Seltzer (which actually wasn’t “too much,” it was just not good for his clean Paleo stomach). 

He literally slept through Christmas dinner at his parents (sad trombone).

Thankfully he felt fairly good enough for Hannah’s pottytraining. 

So by the time he felt better, Christmas break was over and we were headed back to school and work. 

Nora had her annual birthday movie + lunch with Nana & Papa - I always love the experiences over the stuff!

Nora gone @ Nana & Papa’s, Daddy sick and sleeping - just the two of us!

New Year’s isn’t terribly important and I think we were asleep by 10pm - a six-year tradition : )

Hoping 2018 brings us good things... we have Hannah’s annual ECHO and EKG in April - really hoping for stability in her valves or even improvement. I hope her sleep study shows nothing. I hope our house can stay upright (remember the fallen tree debacle?). All I really hope for every year is our health - without that you have nothing, in my opinion!

Diary of a Pink Eye

Last Sunday I woke up with a little crust (sorry) in my eye and it looked slightly pink. 

Oh snap! Thankfully I had some drops left from Hannah’s last bout with conjunctivitis. You are allowed to continue using them from person to person according to the professionals I’ve talked to. I used the drops all day. Towards the afternoon, I felt like something was IN my eye, in my upper lid. It felt a bit scratchy and hurt a bit. 

However, when I woke up Monday - Mother of God. I couldn’t open my eye. It was swollen like I’d been punched or stung! I was freaking OUT. I’d had pink eye last Thanksgiving but it never got beyond the previous photos. 

Please excuse the haggard photos - 38 (with no makeup) is really starting to show (haha!). I showed a friend and he said I looked like I was on Walking Dead - haha! 

Tim took me to Little Clinic at 8:30am - school was cancelled and it was snowing/sleeting. I got in quickly and the NP determined that since I didn’t have any other symptoms that it was bacterial (not viral) conjunctivitis. I guess I just touched my eye with some nasty germs on it. Mom always said, “Keep your hands OFF your face!” This is why. 

She gave me a stronger prescription since Hannah’s drops were for a toddler. By 10am I could open my eye and could see fine. Tim went back to work. 

Today is Thursday - day four of eyedrops. My eyes finally look a bit more symmetrical. Still not the bright white it typically is. 

So this is your lesson: wash your hands and keep them away from your face!! 

Love is Love

Such a cute couple! I hope Hannah finds love one day, too : )

Love is Love

Game Changing Discovery in Down syndrome

Scientists working at the Linda Crnic Institute for Down Syndrome, based at the University of Colorado Anschutz Medical Campus, have discovered how that extra chromosome may be affecting those with Down syndrome.

The study revealed that a number of proteins involved in the immune system are hyperactive in people with Down syndrome, according to Joaquín Espinosa, executive director of the Crnic Institute and a lead researcher on the study. Their interferon response, which is supposed to target viral infections, is constantly attacking things that aren’t there.

This led the research team to determine that Down syndrome is an immune-system disorder, a “game-changing discovery,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, which funded the study.

“It really changes the way we think about all the aspects of Down syndrome,” says Espinosa, who is also a professor of pharmacology at the university.

Fascinating!! 

Game Changing Discovery in Ds

Toilet Training with Down syndrome: Two Days Later

I was nervous about the following day - technically we had met the program goal, but I wasn’t convinced we could chill downstairs out of the “training” environment. 

We kept Hannah home all day and in training underwear. Every time she said “potty,” we would get her on the toilet and 9 times of out 10 she went! She had ONE wet pants first thing in the AM when we put them on. 

We’ve had two days at home since the training day and Hannah has had no wet underpants. I’m pretty amazed and proud. 

While Hannah gets most of the credit for being very smart, I credit Tim and I for spending about a year of getting her on the toilet and praising any voids. Teaching her the sign for potty was key of course. 

She still has wet diapers when she wakes up - who knows how long that will take. I’m not sure we can send her to school in training pants, either. I need to talk to her teacher and see how they feel about it. (Hannah goes four days a week, 2 1/2 hours). 

Like all milestones, every kid is different. Realistically, I totally expect Hannah to still have accidents. What took us essentially one day may not be the same for your family. But it’s worth a shot!

Cheers!

Toilet Training with Down Syndrome: Intensive TT

*This is going to be long and detailed for those who actually want to know! 

Based on: Toilet Training for Children with ASD/DD Presented by: The Kelly O’Leary Center for ASD Division of Developmental and Behavioral Pediatrics Cincinnati Children’s Hospital Medical Center with support from Hamilton County Developmental Disabilities Services

Friday morning Hannah woke me up around 6:30am - sleeping in, believe it or not. :: eyeroll :: We came downstairs and I let her have a snack and watch Trolls while I tried to wake up, have my hot lemon water, then coffee... by 7:45am I’d put all my tools and toys in the upstairs bathroom and it was Go Time.

NOTE: even a small dribble in the toilet counts - holler, praise and reward! Keep pushing fluids all day.

Hannah is three years, three months at the time of training.

7:41am: pee & poop / reward of Cheese Puffs & Trolls in our bedroom 5 minute break
7:47am: pee (assume from here out all voids are rewarded) 5 minute break
7:52am: sit for 30 minutes (This was difficult to keep her entertained... she definitely became irritated towards the end which is when I went for the small blanket to ease her bum!) 
8:22am: no void, so only a 2 minute break inside the bathroom
8:30am: small poop 5 minute break
*At this point, because Hannah had 3 voids in the toilet, sit time is decreased to 25 minutes and break time is increased to 10 minutes.
8:35am: pee 10 minute break
8:45am: pee 10 minute break
8:55am: sit for 25 minutes and had no void 2 minute break
9:33am: pee 10 minute break
*Hannah had three 10-minute breaks with no accidents, so we move to 20 minute sits and 15 minute breaks.
9:43am: sit for 20 minutes, no void, 2 minute break
10:21am: pee 15 minute break
10:36am: pee 15 minute break
10:51am: pee 15 minute break
*Hannah had three 15-minute breaks with no accidents, so we move to 15 minute sits and 20 minute breaks.
11:06am: pee 20 minute break
11:26am: pee 20 minute break
11:46am: poop 20 minute break
*At this point in the program, Hannah has been very consistent with no accidents, so now we move to Initiation Training: set a chair next to the toilet and Hannah has to communicate her need to go. The child either gets on the toilet themselves or you can help them. 
12:22pm: poop 25 minute break (we chose to go this long, not called out by the program)
12:47pm: sit for 15 minute on chair, no void, 2 minute break 
1:08pm: pee 25 minute break
*ACCIDENT* on tarp in bedroom, even after peeing in toilet!
1:21pm: Initiates (Hannah SAYS “potty”) pee
*At this point, we try to get Hannah down for a nap - with a diaper - but she’s a smart booger and asks to go potty to get OUT of napping, so she asks to pee both at 1:39pm and 1:44pm
NAP FAIL
2:57pm: sit for 15 minute on chair, no void, 2 minute break 
3:12pm: sit for 15 minute on chair, no void, 2 minute break 
*I decide to remove the chair from the bathroom and just chill inside to see if she’ll initiate
3:42pm: initiates pee 25 minute break
4:11pm: initiates pee 25 minute break
4:37pm: initiates pee

I’d been emailing Dr. K throughout the day and she was very responsive which was great. I told her that Hannah had been consistently asking to go “potty” and if it was okay that we pick her up to rush her to the restroom. She said YES. The goal is for the child to acknowledge the physical urge and address it. She told us “Congratulations, you’ve made it to the other side!”

We made it here by the afternoon of the 1st day!

All day in the small bathroom...

Toilet Training with Down Syndrome: Prepare

Decide when (3-6 days) and where to do this. We chose the girls’ upstairs bathroom since it’s large and on breaks we could move to our bedroom where she could watch Trolls or Moana - part of her reward. 

Find our what your child’s reward(s) will be and take it away three days prior. Hannah’s was veggie straws, but later learned she really liked Natural Cheetos. Also start pushing fluids. 

Get a timer... a proper one in case your phone is a reward for you child. 

Pen and paper to track sitting, breaks, accidents, etc. 

Anything and everything to entertain you child on the toilet/in the bathroom. Here’s what I had for Hannah: 

• books
• crayons + paper
• pig coin toy
• Trolls singing machine
• ball
• photo books 
• bubbles

You might want to avoid electronics since those could be considered a reward for most kids. 

I also had water and juice in various containers - I let her drink out of my water cup just to get more fluids in her.

Blanket or towel to set on the toilet - the first rounds are long sitting periods and can cause sore bums! If you wrap the toilet, they will still be able to pee inside it. 

We laid down a plastic drop cloth (you can buy a load of plastic ones at Lowe’s/Home Depot) in our bedroom in case of accidents since we have carpet. We also put a stool and chair for Hannah to sit/watch her reward. Hannah only had one accident all day and spilled quite a bit of juice in our room - glad we laid down the drop cloth. 

Other children

You may want to gear up to keep other kids entertained as well. Tim and I needed to switch on and off with Hannah so we didn’t get burnt out (recommended). We knew we could be stuck in the house for days, so we allowed Nora screentime, movies, snacks that we don’t usually keep, etc. 

Getting started

Dem Natural Cheetos

Toilet Training with Down Syndrome: Pre Work

*I’m documenting this to share our experience with other families whose kids have Ds - or typical kids too!

Looking back, Nora (typical) was fairly easy to train. She watched me “go” and showed interest around 18months so we got a small potty and started introducing the idea.

One weekend I just put the training underwear on Nora and it just progressed from there. I can probably count her accidents on one hand. 

Fast forward to Hannah (T21), age 2 (about a year ago). I knew there would be challenges solely based on her (assumed) lack of communication and developmental delays. Regardless, we started introducing her to the potty at age 2. She was starting to walk and had core strength, so why not? 

We got into a routine of putting her on the toilet first thing in the AM, mid-morning, before nap, in the PM, and before bedtime. Every time Hannah voided (pee or poop) we would cheer like fools and reward her with a marshmallow. 

Within the Ds community, I’d read that TT (Toilet Training) can take a very long time; the average age being anywhere between 3-6 years old. That’s a big window. I knew an intensive TT class was offered at Cincinnati Children’s and had been announced among the online Ds groups. I thought it was worth a shot. 

The method was developed by the psychologists at Cincinnati Children’s Autism Center. They opened the class up to other developmental disabilities - such as Down syndrome. It was a two-day evening class this past summer. Most families there had sons with autism, whose average age was six - and not toilet trained. I almost felt guilty for being there for my 2-year-old daughter who has Ds! 

This method is suggested - not required. We could do a scheduled method, which takes longer, but Tim and I work full time and can’t be with Hannah around the clock to set on the toilet. The intensive method has backed research and proof of it working. 

In a nutshell, you prep by pumping your kid full of liquids and taking away their reward a few days out. The program starts by setting the child on the toilet for 30 minutes (yes, long). If they go, reward them and they get a break out of the restroom. Once they go three times on the toilet, the sitting time decreases and the break time increases. 

The child stays pantless. Meals can be eaten either on breaks or in the restroom. Yup.

Once they are up to accident-free breaks of 15/20 minutes, you move to Initiation Training. Here, they sit on a chair in the bathroom and need to communicate or move to the toilet on their own. Once they are far from the restroom and initiate that they need to void, you’ve basically made the end goal: The child attends to the physical urge.

You have to set aside 3-6 days which sounded daunting and hard as two full-time working parents. Christmas break it was!

Hannah Updates

Sleep study

Hannah and I had an Upper Airway Clinic visit the week of Dec 11. They asked about her medical history and lots of questions about our bedtime process and how she sleeps, if she snores. After the brief questionnaire and checking her vitals, the doctor said he really doesn’t expect the study to show anything! However, he did say sleep apnea can show up at any time - which I did not know. I assumed apnea showed up when our kids were young - not the case. Which is why we would do the next study in about three years. 

Sleeping/Re-training

Before summer vacation (!) we had been doing a good job of getting out of Hannah’s room before she fell asleep to stop the bad habit of laying with her until she fell asleep. Well, vacation threw that in a tizzy, and we reverted to old habits. Which in turn I think has caused Hannah to wake multiple times in the night simply for comfort. 

Look, I like cuddling my kids, too, but waking up 2-3X a night just to put your kid back to bed is not healthy for any of us. We’re making baby steps to get her more independent. We’ve started simply sitting in her room, not acknowledging her, and letting her get to sleep on her own. 

A few times we try to leave the room and if she comes into the hallway, we don’t say a word and walk her back in. She cries and I feel bad, but for our family, it’s what we feel will help us all get better sleep. Hannah is smart enough to whimper “potty” behind the door to let her out. It only works 1-2 times then she clearly does not need to potty again!

Potty

Hannah has been communicating fairly well to go potty - we also regularly put her on at certain points in the day. We had a few days before Christmas when she woke with a dry diaper! While I feel we’re ahead of the average Down syndrome schedule, we’ll still be initiating an intensive toilet training on Friday the 29th - New Years Day! It’s not easy for us to find 3+ days to stay home and stay locked into the bathroom with her, so this is our first pass. 

It’s going to be difficult probably for Mommy & Daddy, mentally and emotionally! 

Speech

We touched base with our therapist at Cincy Children’s - we haven’t seen her since early September. She was super happy with how far Hannah has come and is very verbal. She said we don’t need to check back in until summer when we may ramp up to keep up the momentum!

Well Done Target

*Can you tell I have some extra time today to catch up on the blog?

We sent the girls to school today in a weak attempt of holiday clothing... I keep them in such basics that poor Nora put on a white and red striped hooded tunic and said “Mom, I can be a candy cane!” Bless her creativity! Hannah had on a red/black buffalo plaid shirt with black leggings. :: shrug :: 

So now I’m determined to do a better job at making sure they feel festive with certain holidays - especially with all the celebrating at school!

This is where I was headed: I was on Target’s website and I knew they were becoming more inclusive in their marketing - all types of differently-abled kids in their ads. Scrolling through the girls’ shirts, I saw this cutie modeling! 

Well done, Target!