Busy October

October seemed super busy for some reason, but it also seemed to drag on for a long time. We pretty much celebrate Caleb's birthday for about two weeks. He had a party with his friends on the 14th, a family party on the 20th, and of course our own little celebration at home on his actual birthday, the 26th. It's hard to believe my first born is five! He has grown up so much in the last year.

I took him in for his annual well check earlier this week. He weighs 31 pounds and is 37 inches tall, so that means he gained about three pounds and grew about three inches this year. He's still at the bottom of typical growth charts, and he's at the 11th percentile for both weight and height on a Down syndrome growth chart. He wears 3T shirts and 2T pants. Depending on the brand, he wears anywhere from a 7 to a 9 in shoes.

H still loves dinosaurs, "The Lion Guard" and "The Lion King".

Halloweens Past

Halloween is only a few days away. I was feeling a little nostalgic and found photos of the boys on their past Halloweens. I hope you enjoy these flashbacks as much as me! The boys will be Buzz Lightyear and Woody from "Toy Story" this year!

2012 - Oklahoma Sooner

2013 - Charlie Brown

 

2014 - Monkey

2015 - Fireman and Dalmatian

 

2016 - Dinosaur and Zebra

Potty Training Details

A fellow mom recently asked for potty training advice on our local Down syndrome association's Facebook page. As I was gathering some info to send to her, I checked here and realized I never really shared what worked for Caleb. I followed basically the same plan for Tyler, and both boys did great.

It's been eleven months since I started potty training Caleb. He is pretty much "potty trained". He never wears a pull-up, even at night! He rarely has an accident... maybe just 2-3 each week. When he does have an accident, it's usually poop.

I started potty training Tyler almost nine months ago. He still wears a pull-up at night, but he's in undies during the day. He occasionally has an accident if he's busy playing and forgets to go. His accidents are usually just urine. He's great about hurrying to the bathroom if he needs to poop.

Here are a few of my favorite potty training tools...
Gerber Training Underwear
Flushable wipes - we've tried several brands, and these are my favorite
Travel potty seat
Potty seat - for use at home
Potty - for use at home. I even put it in my car for long road trips. There isn't always a convenience store or rest stop when the boys need to go, so we sometimes pull of on the side of the road and let them use this. Put a dry diaper or pull-up down in the bottom, and it'll contain the mess for you. You can then dispose of it at your next stop!

Below are some notes I typed for a friend when we were still in the thick of things. She wanted to know exactly what we were doing, because she was getting ready to potty train her daughter who has Down syndrome. I'm by no means a potty training expert, but I hope you find it helpful!

Day One

Caleb wore only training underwear (not pull-ups). I let him drink lots of liquids (water, lemonade, pedialyte) and planned to take him to the potty every 10 minutes. I didn't let him get up until he used the potty, so I let him look at books, we'd sing songs, etc... anything to pass the time.

When the fluids were really going through his body, he sometimes had accidents before the 10 minutes was up. When he had accidents, I took him to the bathroom and told him to try to use the potty the next time and changed his underwear. I didn't make a big deal out of the accidents. 

As the day went on (and he got tired of drinking so much!), I noticed that he was sitting on the potty for several minutes before needing to go. I increased the time off of the potty to 15 minutes. 

At nap time, I put a pull-up on him... and enjoyed a much needed break! When he woke up from his nap, the underwear went back on. He didn't get a pull-up again until bedtime. 

Every time Caleb pottied, he got a star sticker to put on a reward chart that I printed out for him. After several star stickers, he earned a dinosaur sticker. And if things were going really well or if I felt like he needed a little extra motivation, he earned a little plastic dinosaur toy. I bought a bunch of dinosaurs on Amazon for less than $1/each and hid them in a bathroom cabinet.

Day Two

We started with 10 minute intervals (because he drank a lot of milk with breakfast that morning). We then moved to 15 minute intervals and, by the end of the day, 20 minute intervals. I didn't push fluids quite as much on day two.

By the end of day 2, he was over the stickers. I still put them on the chart, just so that I could continue measuring his progress. He was aware of when he was going, and he didn't seem to care about earning any sort of reward. Praising him for a good job seemed to be enough for him.

Day Three 

We ventured out of the house that morning and faced our first public bathroom experience. Caleb was terrified of having to use a public restroom toilet. I felt so bad for him! I switched him to a pull-up and decided it wasn't worth either of us getting stressed out. When we got back home, the underwear went back on and I took him to the potty every 15-20 minutes. Caleb had a family birthday party that evening, and I put a pull-up on him then too... so that we could all enjoy the party.

Day Four

Sunday... I was so worried about how things would go at church. We're there for about four hours, and he has three sets of teachers during that time. I decided to send him in pull-ups and asked his teachers to take him to the potty every 30 minutes. He was willing to sit on the kid-size potty, but he wouldn't use the restroom. When we got home, we switched back to underwear and took him every 20 minutes for the rest of the day.

Day Five

My parents watched the boys while I was at work. My mom was willing to continue with the potty-training. She trained three kids, so I figured she could handle it. I didn't give her much instruction. By the time I got home that afternoon, she said he was going to the bathroom every 30-45 minutes and had only had a couple accidents. 45 minutes?!... I was so excited! I continued that through the evening, and he did great!

Day Six

First day back at school after fall break. I emailed his teacher the evening before to let her know how things were going and to see what they wanted to do at school. She said to send him in underwear, and they'd take him every 15-20 minutes. I told her that he could probably go longer than 15-20, but I'd let them do whatever worked best for them there. 

When I picked him up, I was thrilled to hear that he pottied in the toilets at school and had no accidents! 

Since then...

He is continuing to wear pull-ups for naps and overnight. As soon as he wakes up in the morning, we take him to the potty and then he puts on underwear. I take him to the bathroom every 30-45 minutes when we're home. He has been able to go hour-long stretches at times, but I really prefer to keep it to 30-45 minutes. He rarely has pee accidents now. He is not consistently pooping in the potty yet, but we're continuing to work on that. 

He has has several nights and naps when we has woken up with a dry pull-up. We've also have had a few nights where he woke up during the night and cried for me. I got up and took him to the potty, and then he went right back to bed. I think we'll stick with the pull-ups at nap for several more weeks and probably longer for overnight. 

The End of an Era

It's becoming very evident that Caleb is moving into a new phase of life. For the last 4.5 years, so much of our weekly schedule has been focused on therapy appointments. Caleb has worked with the same fantastic physical therapist since he was just a few months old. That therapist works part-time, and her schedule won't work with Caleb's new school schedule next month. Our last session with her will be tomorrow, August 3rd. It's crazy to think that we won't see her anymore. She has been such a big part of helping Caleb get stronger and meet so many gross motor milestones. We absolutely love the clinic, so we are going to continue therapy there. I'll take Caleb one day after school each week to work with another therapist. I imagine it'll take him a few weeks to get adjusted to working with someone new, but I'm excited to see how he does with her.

Caleb hasn't been working with his OT for quite as long, but I think he has been seeing her for at least three years (maybe a little longer). She doesn't have any after-school openings, and neither do the other therapists at the clinic. It's a pediatric OT clinic, so most of their patients are school-age and also needing those coveted appointments in the late afternoons. Caleb is on a wait-list, but we don't know how long it'll take for something to open up. We're waiting to hear back from another clinic. For now, he will finish outpatient OT on August 8th. 

We have the world's best speech pathologist. Our schedules fortunately still work, so he will continue seeing her weekly.

Caleb does get PT, OT and Speech at school, and so much of what he does in the classroom helps with his OT goals. I'm not too worried about him no longer doing outpatient OT.

For Tyler's sake, I'm kind of excited about freeing up our schedule a little bit. For 2.5 years, he has tagged along to so many appointments and missed so many good naps. It will be really good for him to have a little more time to do his own thing. I'm off on Tuesdays and Thursdays, so Tyler and I will have six hours together while Caleb's at school. I'm sure we'll find all sorts of fun things to do on those Tuesday and Thursday mornings. He still takes great afternoon naps, so I'm looking forward to a couple quiet hours between lunch and when we leave to pick up Caleb from school. 

2017 Team Caleb Shirts

This year, we're going blue and yellow... Down syndrome awareness colors! Sizes and prices can be found if you scroll past the following images!

 

Moisture-wicking tee (Sport-Tek 100% cationic polyester interlock)

Available in the following unisex sizes:

Adult: XS-4XL

Youth : XS(4), S(6-8), M(10-12), L(14-16), XL(18-20)

$15.00/each

Moisture-wicking racerback tank (Sport-Tek 100% cationic polyester interlock)

Available in the following sizes:

Ladies XS-4XL

$15.00/each

Cotton tee (Bella+Canvas 100% combed/ringspun cotton)

Available in the following sizes (unisex):

Adult: XS-4XL

Youth: Small, Medium, Large

$12.00/each

Infant/toddler tee (Rabbit Skins 100% cotton)

Available in the following sizes:

6mo, 12mo, 18mo, 2T, 3T, 4T, 5/6, 7

These sizes tend to run small.

$10.00/each

Add $5/order if you need it shipped.

Please let us know which style/size you'd like. You can pay with cash, check, PayPal or Venmo. If you want to use PayPal or Venmo, send me an email or comment below. Shirt orders are due Sunday, Aug 20th.

Shirts should be ready for delivery on early-mid September.

One Minute Monday

It’s been a while since I posted a “Five Minute Friday”, because it seems a free five minutes can be hard to find some days. So I’m going to do a super quick “one minute Monday” just to share a few things that are on my mind.

-        Our pastor is out of town this month, so we’re having some guest preachers each week. Senator James Lankford (a member of our church) preached the past two Sundays on the topic of stress. He spoke about Jesus’ time at the Last Supper as he prepared himself and his disciples for his eventual death. Both sermons were so good. I wish I could tell you more about what he said and what I learned, but the clock’s ticking. You can listen to the sermons here. http://qsbc.org/resources/sermons/

-         

-        Caleb had his thyroid levels checked last week. He has a history of “dysfunctional thyroid”, which means his TSH and T4 levels don’t seem to be in sync. This time, his TSH was elevated but his T4 was totally fine. There seems to be some confusion about whether or not to treat it. He has taken Synthroid for periods of time twice and has been off of medication for the last year. We’re going to recheck his labs next month and then figure out if we need to start treating it again. I would love to avoid having him on a daily Rx, but we’ll do it if we need to. In the meantime, I’m researching ways to help those thyroid levels naturally. We already avoid soy products, because we’ve been told soy can negatively affect thyroid function.

I typed quickly and still went over my one minute… oops! 

Mild Sleep Apnea

I know I've mentioned some of this here already, but here's a little update. Caleb had a sleep study done back in December. We learned that he had "borderline severe obstructive sleep apnea", and his ENT recommended that Caleb have a tonsillectomy/adenoidectomy to help open up his airway. He had that procedure in March, and then Brad took him for a second sleep study in June. We had an appointment with the ENT yesterday and went over the results. His sleep apnea improved 2.5 times! While that's so good, he still has mild sleep apnea. Nothing needs to be done about it now, and we will do another sleep study in a year.