Merry Christmas

Merry Christmas from The Johnsons!

Tyler Talk #2

Mommy: "Tyler, what do you want for Christmas?"

Tyler: "A birthday!"

Mommy: "What do you want for your birthday?"

Tyler: "A cupcake"

Tyler Talk #1

Mommy: "Tyler, what do you want for Christmas?"

Tyler: "Um... a birthday"

Mommy: "How old do you want to be?"

Tyler: "Two" (he'll turn two in January)

Mommy: "I'm going to have a birthday next month. How old am I going to be?"

Tyler: "Too old" (yep)

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. 

Tyler - 21 Months

Weight: 26.0 lbs

Length: 34 inches

Clothing size: 24 month shirts, 18 month pants

Shoe size: Size 6

Diaper size: Size 4

Eating: Tyler loves milk, cheese and grapes. One thing I have to make a note of here, because I want to remember it... sometimes he calls grapes "G-Bs". I have no idea why, but it is so adorable 

Sleeping: Tyler goes to bed at 8:00pm and wakes up around 7:00am. If we're in the car, he often will fall asleep for a brief morning nap around 10:00-11:00am. He also usually takes a good nap after lunch. 

His days: Tyler goes to Mother's Day Out three days each week. He also tags along to Caleb's weekly PT, OT and speech therapy sessions

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! 

Team Caleb Shirts

It's time to place your Team Caleb shirt order! Let me know if you'd like one! 

Moisture-wicking tee (100% cationic polyester interlock)

Available in the following sizes:

Adult unisex fit: XS-4XL

Adult ladies fit: XS-4XL

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

$15.00/each

The moisture-wicking shirts are available in a unisex fit and a ladies fit. When ordering, please tell me which fit and size you'd like.

50/50 tee (50% cotton, 50% polyester)

Available in the following sizes (unisex):

Adult: S-4XL

Youth: XS-XL

$15.00/each

Infant/toddler tee (100% cotton)

Available in the following sizes:

Infant: 6mo, 12mo, 18mo, 24mo

Toddler: 2T, 3T, 4T, 5/6, 7

These sizes seem to run small.

$10.00/each

Please let us know which style/size you'd like. You can pay with cash, check, or PayPal. If you want to use PayPal, send me an email or comment below. Shirt orders are due Sunday, Aug 21st.

Mama's Boy

I just had to get on here to tell you of something so sweet that my Tyler did yesterday. I'm "under the weather" with another sore throat and was in our master bedroom taking a nap Sunday afternoon. Tyler asked where I was, and Brad told him that I was asleep. Tyler then ran to his bedroom, grabbed his beloved Zebra stuffed animal, took it to my room and sat it down at my bedroom door. He always wants Zebra when he's tired, and he was so thoughtful in offering it to me. I sometimes get so tired of his clingy "mama's boy" personality, but I just love the little moments like this... and I instantly forgive him for the times he wears me out!

Tyler - 18 Months

Weight: 24lbs, 6oz (53rd percentile)

Length: 32" (35th percentile)

Clothing size: 18 month shirts, 12 month pants/shorts

Shoe size: Size 5

Diaper size: Size 4

Eating: Tyler LOVES milk. We really try to stick to the pediatrician's recommended 15-20 ounces a day, but he'd drink so much more if we'd let him. He also likes pizza, PB/honey sandwiches, raisins, grapes, and blueberries. He still likes baby food pouches, and I like that it's an easy way to get him to eat some veggies. Peanut butter Cheerios were discontinued, but Tyler seems content with the multigrain Cheerios for now. He also recently discovered a love for Annie's graham bunnies and Teddy Grahams. 

Sleeping: Tyler goes to bed at about 8:00-8:30pm and wakes up around 7:00-7:30am. If we're home or in the car, he often will fall asleep for a brief morning nap around 10:00am. He also usually takes a good nap after lunch. 

His days: Tyler goes to Mother's Day Out three days each week. He also tags along to Caleb's weekly PT, OT and speech therapy sessions, and he actively participates in all of them... two for the price of one?! 

Highlights of the last three months: Goodness... he has grown up so much over the last three months! Here are just a few of the "highlights" and big milestones

Tyler officially became a "walker" a couple days after turning 15 months, and he never looked back. He loves to run around with Caleb, crawl up the stairs, scoot down the stairs, "jump" in the pool and climb on anything he can. He has no fear! 

He has an insane vocabulary and seems so smart. The things he says sometimes just blow me away. A couple examples...

- We were recently at the lake with Brad's family. Brad's dad was doing "This little piggy" on Tyler's toes. When Dane finished, Tyler looked around and asked "What pig?"

- One morning last week, he was sitting next to me on the sofa and sneezed. He spewed a mouthful of partially chewed Cheerios all over my arm. He looked at my arm and exclaimed "Gross! Clean it!" 

He is learning numbers and starting to count. His idea of counting to ten is "One, two, four, SIX (his favorite), ten!" We need to keep working on three, five, seven, eight and nine... but give him a break, people... he's only eighteen months old! 

He doesn't like to have on a wet diaper, so he usually does one of two things

- he gets a diaper from his drawer and brings it to me

- he runs to me and says either "potty" or "pull-up"

He is very interested in the potty, so we're introducing him to the whole concept of potty training. He sits on his potty several times each day and has successes every now and then. He loves it when I let him wear Pull-ups instead of diapers. We're not going to put any pressure on him to potty train soon, but I expect it will come easy to him when we feel that it's time to get serious about it. 

He is currently getting all four of his first-year molars. That takes the teeth count up to ten. 

Tyler's Tubes

Tyler got his first ear infection in December 2015 and has had six more since then. He finally got a set of tubes today! I hate sending my babies back for any sort of surgical procedure, but this was definitely one I was so ready for. Tyler has such a hard time with ear infections, and I hope we're done with them now. 

Tyler and I arrived at the hospital at 6:45 this morning for his 8:15am procedure. He did so well while the nurse checked his vitals and while we visited with the ENT and anesthesiologist. When the time came for Tyler to go to the OR, he willingly went to the nurse. He refused to let go of his precious Zebra, though, so they went back to the OR together. The procedure only took a few minutes, and the ENT said it went well. By the time I got called back into recovery, Tyler was awake and sitting up in bed. He drank some apple juice and then we snuggled while the recovery room nurses went on and on about how adorable he was. We were able to leave after about an hour in recovery and were at the hospital for a total time of about three hours. It was so easy, and Tyler was a perfect patient!

One final note... that Integris bear in the photo? We have four of them now... a collection of cheap plush animals to remind me of the thousands of dollars we've spent there. I sure hope that collections stops at four, but I won't be surprised if we add a few more.

We Moved!

After years of dreaming, months of planning, and more months of construction, we finished our new house! We moved in mid-May and are still getting settled. I was so excited about having a new house and no "home projects", but that's a joke! We're constantly busy hanging artwork, organizing cabinets and closets, shopping for a few key pieces of furniture, and making way too many trips to Lowe's for all sorts of random little things. I'm also adjusting to having a little further drive to work and Caleb's therapies, shopping at different stores, picking up the occasional takeout at different restaurants, etc. It's crazy how moving just a few miles changes so much! 

I plan to blog much more about our whole home building experience, but for now I'll leave you with some photos that our builder had taken. They're from a photoshoot that they did a couple days before we moved in.

More info and photos can be found on Houzz: http://www.houzz.com/projects/1755973/steepleview

Photo credit: QProPhoto

Builder: OklaHome Home Builders

Happy Birthday, Daddy

Happy birthday, Brad! The boys and I love you so much!

All photos by Anna Bryan Photography

Tyler - 15 Months

Weight: 21 lb, 15 oz

Length:  30.5"

Clothing size: 18 month shirts, 12 month pants

Shoe size: Size 3 or 4 (depending on the shoes)

Diaper size: Size 4

Eating: Tyler weaned from nursing at about 12.5 months and transitioned to drinking whole milk easily. As for food, he likes pizza, peanut butter and honey sandwiches, string cheese, chicken, raisins, dried blueberries, and peanut butter Cheerios. He also still likes baby food pouches... sometimes they're the easiest way for me to make sure he's getting his veggies. Most "real" veggies just get tossed on the floor these days.
Sleeping: Tyler goes to bed at about 8:00-8:30pm and wakes up around 7:00-7:30am. Up until about six weeks ago, he was still waking up several times each night. We tried some sleep coaching" and within a few nights, he was sleeping like a champ! And now we're all sleeping better! Tyler usually takes an afternoon nap at about 1:00 and sleeps for 1-2 hours. Sometimes, he takes a short morning or late afternoon nap... usually those happen in the car seat when we're driving somewhere. 

His days: Tyler goes to Mother's Day Out three days each week. When he's not there, he tags along with me to all of Caleb's activities (therapies, swim lessons, etc.). On Tuesday and Thursday mornings, Tyler and I have a few hours to ourselves while Caleb is at pre-k. We usually run errands or do something fun like go to the science museum or a playground.

Highlights of the last three months: Tyler is taking some steps now. I wouldn't quite consider him an "independent walker" but he is so close. 

Go Girl Run OKC

Last Thursday evening, I was looking ahead to the weekend and dreading the 11 mile run I had on my schedule. I'm in the middle of training for the OKC Memorial half marathon that'll be toward the end of April. I needed to get that run in, but it just sounded long, hard and boring. And then I remembered that I recently heard about a half marathon that was happening in OKC on Saturday... the Go Girl Run. Some sick running-obsessed part of me actually thought that running 13.1 miles with a bunch of other runners would be more fun than running 11 solo. So anyway, I got online and realized that I had until 11:59pm that night to register. I debated about it for about an hour and finally registered at 11:04pm... 30.5 hours before the race would begin. The longest I've run since early January was nine miles, but I figured it was worth a try.

The race started at 6:30am in downtown OKC and went through some fun neighbhorhoods (Deep Deuce, the Paseo District, Crown Heights, the Plaza District, etc.). I didn't go into the race expecting much, other than hoping I'd survive that last 2.1 miles I didn't feel totally prepared for. The run actually went better than expected. I finished in 2:20:46, and I missed my PR by only 76 seconds. Not too bad. The OKC Memorial half marathon is just a few weeks away, so the training continues on. Maybe I'll set a new PR at that race?!

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. 

Tyler - Twelve Months

Weight: 19 lbs, 6 oz

Length: 30.5"

Clothing size: 12-18 month shirts, 12 month pants

Shoe size: Size 3

Diaper size: Size 3

Eating: For the past month, Tyler was still nursing when he was with me and taking bottles at MDO, but we're starting the weaning process now that he's one. He nurses a few times each day and drinks whole milk at other times. He refuses to eat any homemade baby foods now, except for his favorite avocado/banana. He loves yogurt and baby food pouches. His favorite bite-sized foods are peanut butter Cheerios, raisins, and cheese.

Sleeping: Tyler goes to bed at about 8:30pm and wakes up around 7:30am. He often wakes around 10:00pm and quickly falls back asleep if we rock him for a little bit. He also usually wakes up around 2:00-3:00am. (Brad and I are hoping that the night-waking comes to an end soon!) He usually takes a nap around around 11:00 and sleeps for 1-3 hours. Occasionally, he takes a short afternoon nap.

Highlights of the month: Tyler has switched from army crawler to hands/knees crawler. He pulls up to anything he can find, and he loves walking while holding our hands. He hasn't built up the courage to take independent steps yet, but I bet he will soon.