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

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.

World Down Syndrome Day - March 21st

This Tuesday, (3/21) is World Down Syndrome Day! 3/21 is to represent the three copies of the 21st chromosome! Here are some ways you can show your support of people with Down syndrome...

- Wear yellow and blue (Down syndrome awareness colors)
- Wear mismatched crazy socks... https://worlddownsyndromeday.org/lots-of-socks
- Or my favorite... wear your Team Caleb shirt!

Post your photos on Facebook, Instagram or Twitter! #teamcaleb #wdsd2017

One Week Post-Op

It's been one week since Caleb's tonsillectomy/adenoidectomy. I'm exhausted, and I'm sure Caleb would tell you that he's hungry. To catch you up to speed since my last post...

Caleb was discharged from the hospital the morning after his surgery. While that was the plan going into the surgery and even right after, I was surprised they discharged him. I didn't feel like he was drinking/eating well enough yet. The attending physician (who I liked and remembered from when Tyler was at the same hospital for RSV a couple years ago) said that kids who are "borderline doing well" usually do better at home. He was discharged with instructions to give Tylenol/Motrin every 3 hours for the first 24 hours and then as needed after that. He also had a Rx for three days' worth of a steroid and a Rx for a tetracaine lollipop. We were told not to let him drink from a straw for 10 days, because sucking on a straw could loosen the scabs in his throat and cause pain. We were also told to keep him on a diet of liquids and soft foods for 10 days.

I reluctantly took him home, and the hard work began. Caleb didn't want anything in/near his mouth. No drinks, no food, no medicine, and he hated having to be woken up during the night for his Tylenol/Motrin. I told Brad that I felt like I was reenacting a scene from "24" whenever I had to give him medicine. By Monday, we were concerned about how little he was drinking and were starting to worry that he might get dehydrated if something didn't change soon. Brad called the ENT's office and spoke with the nurse. She spoke with someone else (not sure if it was the ENT or the PA), and they agreed to let Caleb start using a straw. There was still the risk of the straw causing some scabs to come off, but they'd rather that happen than Caleb get dehydrated and need IV fluids.

Now that he's drinking from a straw, his fluid intake has increased a little. We also got some chewable Tylenol and Motrin, and he seems happier taking that than the liquid medicines. The jury's still out on the tetracaine lollipop. He doesn't like it, and it's another "24"-like moment whenever I try to give it to him. He seems pretty happy during the day now, but the nights are still tough on him. We're praying that he'll start sleeping better at night soon and that his desire to eat/drink will continue to increase. We've been told that the recovery period is about 10 days, so I'm hopeful that we'll see some big improvement by the weekend.

Happy Heart Day

Happy Heart Day Caleb! We're celebrating four years since his open heart surgery!

Caleb was born with a complete atrioventricular canal defect and needed open heart surgery when he was three months old. He had his annual cardiology check-up a couple weeks ago and continues to be in great heart health! ❤

Potty Time

I just looked back through recent blog posts and can't believe I never posted anything about potty-training Caleb! Caleb wasn't ready to potty-train at the typical 2-3 year old timeframe, but he started showing a few "readiness" signs right before his fourth birthday. So over fall break in mid-late October, Caleb and I got busy with our own little "potty boot camp". He did great and has been in "undies" ever since. He still has the occasional accident, but I'm so happy with how well he's doing.

Tyler wants to do everything his big brother does, so he has been showing lots of readiness signs ever since Caleb started potty-training. I decided to give it a try with him during Christmas break, but it kept getting put off due to busy schedules and illnesses. I finally got around to devoting some time to do "potty boot camp" with Tyler on New Year's Day. He's only 23 months, so I figured I'd introduce it to him but not push it too hard. He picked up on it all right away and has seriously blown me away! He's having a few accidents each day, but he's having way more successes. I wouldn't be surprised if he's potty-trained (day time... not at night) by his second birthday later this month.

Caleb's Four

Happy fourth birthday to Caleb!

He has had a full month of birthday celebrations! It started off with a weekend trip to Texas to spend time with my parents and brothers and to see the animals at the Fort Worth Zoo.

The following weekend, we celebrated his birthday with some friends. The plan was to have his party at a brand-new play gym that a friend was opening, but construction delays pushed back their grand opening and forced the party to be cancelled. So instead, we texted everyone and moved the party to our backyard. The kids had a blast on the inflatables that we rented/borrowed.

And then this past weekend, Brad's extended family came up for a little family party (we love entertaining at our new house!). Caleb had the best time being the center of attention and surrounded by so many people he loves. 

He has his annual well-check next week, but I tried to get some "unofficial" growth stats at home a couple days ago. He weighs about 28 pounds and is 34 inches tall. I think he grew about two pounds over the last year and grew a couple inches. 

Busy Weekend

What a busy weekend we had! Early Thursday morning, Brad and three of his friends left for a guys' weekend. They went up to Minnesota to watch the Ryder Cup and to play golf at a couple courses in Minnesota and Iowa.

I solo-parented Thursday/Friday, and then my parents arrived to our house Friday evening. The boys were thrilled to see their grandparents, and we were excited to have our first overnight guests in the new house. 

We headed to downtown OKC bright and early Saturday morning for the Down Syndrome Festival and 5k. I walked the 5k and pushed the boys in the Bob Duallie stroller. The boys got out of the stroller toward the end and ran across the finish line... so adorable!. We had a great time at the festival and loved seeing so many family/friends there!

Following the festival, we headed down to Lawton, OK and spent some time at the Museum of the Great Plains. We get free admission there with an Oklahoma museum pass that we have, so we were excited to check it out for our first time. After the museum, we went to an early dinner and then my parents took the boys to their house in Wichita Falls, TX (about 40 minutes away). I checked into a hotel room in Lawton and enjoyed a super quiet night's sleep.

I woke up early Sunday morning and ran the Spirit of Survival Half Marathon. It was my fourth half marathon in 2016 and my seventh ever. Miles 0-10 felt great, but then my right calf cramped at about mile 10. I struggled the rest of the way in. My parents and the boys drove back up to Lawton that morning and were there to cheer me across the finish line. Hearing Caleb and Tyler yell "Go Mommy!" might just be one of my most favorite things! Caleb was excited to get his hands on my finisher's medal, and Tyler was eager to get his hands on my post-race snacks. 

I hurried back to the hotel for a shower, and then we all went to an early lunch. The boys and I returned back to OKC Sunday afternoon, and Brad arrived home from his trip Sunday evening. And now another busy week has begun! 

Fourth Time's a Charm?

Caleb's hearing is something we've monitored closely ever since he failed that newborn hearing screening while in the NICU. We've learned that the hearing loss he deals with is mainly the result of fluid that has collected in his ears. He has teeny-tiny ear canals that don't drain well, and he needs tubes to keep that fluid cleared out.  I started noticing that Caleb was having trouble hearing in June, and it had been about eight months since he had a set of tubes put in. He already had an appointment scheduled with the ENT in July, so we waited until then to have things checked out. He was hearing conversation well, but he seemed to have a hard time hearing me if I was across the room or yard. When we went to the audiologist and ENT in July, they confirmed that both tubes had come out and agreed that he needed a new set. We all hope and expect that he won't need to have tubes forever, but he still needs them for now. The first available date to do the procedure at our preferred hospital was in mid-August (Caleb's second day of school). 

His procedure wasn't scheduled to begin until after lunch, so he was able to go to pre-k that morning. I just picked him up before snack time, so that he wouldn't be tempted to eat or drink... no food or fluid before the procedure. 

We had a little extra time before Caleb needed to check in at the surgery center, so we stopped by the NICU where he spent his first ten days. We spent a few minutes visiting with two of our favorite NICU nurses and poked our heads in for a quick peek at the renovated unit. Caleb and I then met Brad at the outpatient surgery unit and got all checked in. Pre-op was super easy and quick, as was the actual procedure. Caleb never wakes up particularly happy from anesthesia, but he calmed down once he had his Kindle and could watch "dinosaurs" (Land Before Time). 

Six weeks later... I took Caleb to the audiologist and the ENT's PA yesterday for his follow-up. While I know Caleb is hearing better than before, his hearing test showed that his hearing isn't quite as good as we'd like for it to be. We're going to give him ear drops for the next week to try to clear out any "gunk" that might be in his ears, and we'll return to the audiologist in December. 

September 2016 Life Update

Posting things here has definitely fallen by the wayside over the last few months. We had a great, relaxing summer. We didn't do much aside from enjoying every minute of our new home and neighborhood. Trips to the pool and playground, having friends over for dinners and play dates, and countless evenings spent in our backyard. The section of the neighborhood where we built is slowly filling in. We got some new neighbors across the cul-de-sac a few weeks ago, and our next door neighbors are hopefully moving in a couple weeks.

Caleb and Tyler started a new school year about a month ago. Caleb is attending pre-k at a nearby elementary school. He's in a fantastic inclusive classroom with the best teacher and aides. There are 15-16 kids (I can't remember exactly) in his class, and four of those students have some sort of special need. The teacher has told us that things are going really well. Caleb is learning from his typically-developing peers, and they're doing a great job of including him in their activities.

Tyler is attending the same MDO that we've been at since Caleb was a baby. He's the youngest in his classroom, but he's doing great keeping up with the "big" kids. I'm still working part-time while he's at MDO... and because of that schedule, we take Caleb there for the afternoons on Monday, Wednesday, and Friday. He's pretty much only there for nap time and play time, but he enjoys it and it allows me to continue working. 

We have lots of fun things coming up in the weeks ahead, so I'll try my best to get back here more often and fill you in and what's going on. 

Potty Training Advice?

We've been really casual about Caleb's potty training for the last several months, and the time is coming to get serious about it. My plan is to focus hard on it while Caleb's out of school for fall break next month. Please share any advice or product recommendations! I've read lots of articles and blogs, but I still really have no clue what we're about to get ourselves into! 

3/21 - World Down Syndrome Day

March 21st. 3/21... representing Trisomy 21 (three copies of the 21st chromosome). World Down Syndrome Day!

Four years ago, I had no idea that this day existed. And this year, I found myself perfectly balancing our normal routine and taking some time to celebrate Caleb and this community of individuals my precious boy introduced me too.

Selfie with Mom before pre-k

The "so cute" pose - just for you Jaime!

Caleb spent the day as he does most Mondays... pre-k, a visit to Gigi's house and swim lessons.

For the last few months, I've been on a committee that was planning a luncheon for World Down Syndrome Day. Sean McElwee is a 22 year old self advocate from California and is on A&E's series, Born This Way. He was the keynote speaker at our luncheon! I was so excited to meet Sean and his mom, Sandra. I had so many questions to ask Sandra since she's 19 years ahead of me in this journey... but I totally forgot them all in that brief moment. Oh well. It was still great to meet them, and I can't wait for the second season of "Born This Way" to air this summer!

World Down Syndrome Day

March 21st is World Down Syndrome Day! We have a couple fun activities planned that day, and we would love for you to join us in celebrating Caleb and the rest of the Down syndrome community! If you are the proud owner of a Team Caleb shirt, please wear it on Monday! Take a photo and either send it to me or post it on your social media account! We'd love to see you celebrating our little guy!

OKC friends, head to 23rd Street for dinner Monday evening! Back Door BBQ and Big Truck Tacos will donate 10% to the Down Syndrome Association of Central Oklahoma! 

And while you're here reading this blog post, check out this beautiful video!

Happy Heart Day Caleb!

It's been three years since Caleb's open heart surgery! Our heart-shaped pancake breakfast celebration is one of my favorite family traditions. Caleb had an outstanding check-up with his cardiologist a few weeks ago, and his heart still looks great! We are forever thankful for God's provision and protection, the skillful hands of Caleb's surgeon, the expertise of the cardiac team at Childrens Med Center in Dallas and Children's Heart Center in OKC, and all the prayers lifted up by our family and friends. 

2015 Review

Here's the nine most liked photos from 2015 on my instagram account. These photos pretty much sum up our year.

First row (l-r)
- Caleb and Brad after Caleb was discharged from the hospital in Kansas where he was treated for RSV and pneumonia.
- Caleb was so excited to hold his baby brother! They didn't get to meet at the hospital because Caleb had the flu when Tyler was born. January and February were rough months for illnesses in our family. Let's hope 2016 treats us better.
- Welcome to the world, Tyler Cole! Brad and I were so excited to meet our little guy!

Second row (l-r)
- Baby Tyler on his birth day. His head was too big for any of the newborn hats at the hospital.
- My precious family of four
- Those boys. "Tyler bit me!"

Third row (l-r)
- Happy Heart Day, Caleb! We celebrated the second anniversary of his open heart surgery on Feb 1st
- Another pic of my precious little family
- Caleb started walking this spring. What a game changer that milestone was!

Family Photos - November 2015

Our wonderful photographer, Anna, came to OKC a couple weeks ago and took our photos at a local tree farm. As always, she did an amazing job. If you know of anyone who lives in/near Little Rock, Arkansas, she's trying to build her photography business there. I definitely recommend her! I wish she still lived in OKC, but I love that she takes the time to photograph us when she's back in town visiting her family. Here are a few of my favorites.