Sleep Study Results!

Took Hannah for her sleep study results with a bit of trepidation. No one made it sound like there would be any worry, but I had to keep my mind open that something could show up. It did. 

The test itself went well - Hannah slept 8 hours so the team was able to gather a lot of information. They did record “episodes” of shallow breathing/obstruction. Anything above 1.5 episodes is considered having apnea. Hannah had about seven per hour. So - moderate sleep apnea!! Not severe, but enough to take action. (Her friend, Joe, had 8 per hour and had his tonsils & adenoids removed. Another friend’s son had 52/hour at birth - went home with O2!)

I was surprised - was not expecting that summary at all - she had no signs or symptoms! Our next steps are to meet with her ENT to confirm he wants to move forward with a Tonsillectomy & Adenoidectomy : ( Blergh! Not super, but it’s minor in the grand scheme of things. 

I swear no kid with Ds even has their T&A anymore. The other Moms have warned how rough recovery can be... getting kids to eat and drink despite their discomfort. 

I just want to get it over with... I’m so over all the procedures, man. I still have Hannah’s annual cardiology appointment looming in the back of my mind... praying praying praying that her valve is either stable or lessened leakage... I’m not sure I can emotionally handle another heart procedure - !

Ds Coverage

Lots of great stuff out there recently despite the Tom Segura special on Netflix. I’ll let you read that upsetting story on your own and not waste my blog space on him or his intelligent audience :: sarcasm ::

The 2018 Gerber Baby has Ds! Wahooooo! Our community was bursting with pride and joy when he was announced. We all felt like Lucas’ parents that day. Kudos to Gerber for Changing the Face of Beauty! Marketers are slowly coming around to making sure all families know their children are valued! 

Second, another story covered by Today Parents - #theluckyfewtattoo. I’ve been privy to this for some time since I stay connected to the community. I definitely want to get it - just need some time and a decision on where to put it : )  

This is a more complicated design a Mom in Australia came up with, but man, it’s pretty awesome! 

Hannah’s First Sleep Study

I’ve talked about routine exams kids with Ds need: eyes, thyroid, and sleep studies to name a few. While we were tackling g-tube and heart issues, our other friends tackled oxygen and sleep apnea issues. Again, low muscle tone = sleep apnea. 

We’ve never had symptoms (snoring, stopped breathing) but Hannah needed a study before age four. I figured winter time was the best lull to get it over with. All the other Ds Moms have painted a difficult picture for me and age 3-5 is the hardest age for cooperation - ack! 
Hannah and I arrived at the Children’s Liberty Campus around 6:40pm - we didn't go back to our room until maybe 7:10pm? I chased Hannah around the lobby - I think most people there were also for sleep studies. All the Moms told me to go to Liberty Campus b.c it’s more quiet than the main campus in Clifton.

Hannah slept for 10 minutes on the way there, too, of course. 

After getting settled, our tech and another clinician came in to start applying sensors. Thankfully they had a TV in there so Hannah watched SING which kept her distracted. 

Two sensors on each leg to see if she had restless legs. I think she had at least 3 on her torso. A pulse oximeter on her toe to watch her oxygen/heart rate. One under each eye to measure her REM. One on each side of her jaw and one under her chin for any grinding. I don’t even know how many were on her head - at least 5? And then the oxygen cannula as the cherry on top. 

Hannah shockingly went with the flow. Didn’t even fight the cannula! I laid in bed with her at 8:30pm and once I got her comfortable on her side and spooned her, she was asleep fast - probably by 8:45pm. 

I tried to get settled in my awful “bed”/chair - I’m not sure I had it reclined all the way? Hannah was coughing from about 10:30 - 11:30pm and trying hard to find a good position. She’s a stomach sleeper, so she was restless. She tossed and turned a lot - I woke up every hour. The tech would come in now and then to adjust sensors or the cannula. 

Finally the tech got the wires in a good position by 2am so I had my biggest block of sleep from 2-4am. Hannah slept fair the rest of the night. 

At 6:15am the tech came in to wake us up - ugh. Sleep study over! She didn’t say anything about how it went - she isn’t who would tell us anyway - the physicians have to assess all the data to see if anything is disturbing Hannah’s sleep - we have our follow up on March 3rd which feels like a long time away!

I felt like a zombie all day Sunday... it was the type of exhaustion where even if I did lay down, I’m not sure I would have fallen asleep. Glad it’s behind us and hoping nothing shows up on her study!

Commercial Love

I’m not a big user of P&G products, but man, their agency sure nails their olympic ads! #loveoverbias is just amazing and I can’t watch without choking up!

Love Over Bias

Additionally, kudos to Toyota for sponsoring the Paralympics and bringing awareness to limb differences!

Good Odds

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...