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...