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

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! 

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!

IEP

We had Caleb's first IEP meeting yesterday morning. I've heard horror stories about IEP meetings, so I was a little uncertain about what to expect. We knew that Caleb would qualify to participate in the school district's PPCD (preschool program for children with disabilities), and we thought he might get some therapies while at school. We also knew that the school district doesn't have a program for "typically developing" three year olds, so Caleb would be in a class with other kids who have developmental delays.

Now Caleb has been in a Mother's Day Out class for the last two years with typically developing peers that are his age. They're all either three or turning three soon, so the same age as Caleb. And while Caleb's development lags behind in some areas, I know he benefits from the interaction he has with his classmates there and from being challenged by his teachers to do the same things that his peers do.

After much thought, Brad and I came up with a schedule that works for us. We decided that Caleb would go to preschool on Monday, Tuesday and Thursday mornings, and he would go to Mother's Day Out on Wednesdays and Fridays. I suspected this 3/2 schedule wouldn't go over too well with the public school, but I really felt that it was what we needed to do.

So back to the IEP meeting...

We met with the principal, psychologist, special ed teacher, OT and SLP. The PT was at another school that day, so she couldn't be at the meeting. We were told that Caleb qualified to receive PT, OT and speech therapies at school, and he would be pulled out of his classroom for those therapy sessions. The teacher told us about some of the things they'll be doing in class, and we also learned about an adaptive PE class that Caleb will get to participate in. We were excited about everything we were hearing. Everyone seemed happy and excited.

As the meeting was wrapping up, I mentioned that we were only going to send Caleb to preschool three days per week. And instantly the mood in the room changed. They all insisted that attending school five days per week is best. I got a little flustered and didn't explain my reasoning as well as I should have, even though I had rehearsed my response in my head several times.

Believe me, I totally want what's best for Caleb. I want to see him grow, learn and reach his full potential. I would never purposefully do anything to hinder that from happening. I also understand that educators and therapists have extensive education, training and experience and probably have their student's best interests in mind too. I truly value their opinions. But ultimately, I feel that Brad and I know what's best for Caleb more than anyone else. So as we had planned, Caleb will attend the developmental preschool program on Mondays, Tuesdays and Thursdays. He will work with the PT, OT and SLP while at school. And he will attend Mother's Day Out on Wednesdays and Fridays. He will also continue working with his PT, OT and SLP that we've been seeing for the last few years in all that spare time we have. :)

Goodness. Caleb turns three on Monday, and he's suddenly a big boy! I can hardly believe he will start public school in just a few days.

Downright Blessed

Today, I'm guest blogging over at Lexie Loo, Lily, Liam & Dylan Too as part of Stefanie's "Downright Blessed: Life with Down Syndrome" series. Hop on over to her blog to read my post about Caleb - http://www.lexieloolilyliamdylantoo.com/2015/10/meet-caleb-downright-blessed-life-with.html

Light

Have you seen Gungor's music video for their new song, "Light"? A childhood friend shared it with me the other day. If I was talented enough to write a song about how Caleb changed me, this would be it. It's so perfect! Thank you, Michael & Lisa Gungor, for gifting us with this beautiful song and video. Your daughter, Lucie, is a "perfect light"... as is my precious Caleb.




"Light"
Your eyes, they opened
And love was spoken
The tears came tumbling down

Your heart was broken
The words were spoken
The tears came tumbling down

And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

Your hands, the creases
Your feet, your breathing
You’re mine, you’re perfect light

And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

I can’t take my eyes off of you oh my Light
I can’t take my eyes off of you

Registration is Open!

Registration is now open for the 2015 Down Syndrome Festival & 5k! Join Team Caleb today!

https://secure.ezeventsolutions.com/fr/DSACO/2015Walk/TeamCaleb

Walking!

When Caleb was a baby, we were told that he probably wouldn't start walking until he was 2-4 years old. He has been working with a physical therapist since he was two months old, and it seems like we've been working on standing up and walking for several months. We are beyond thrilled that, at 2.5 years old, he is walking! He can't go more than about 15 feet without assistance... and really, he usually goes even less than that before either losing his balance or taking a shortcut to grab on to a nearby object/person. But he wants to walk constantly now, and I know that his strength/endurance will improve with time and practice!

World Down Syndrome Day

What a great day celebrating Caleb and the Down syndrome community. This day is all about awareness. And with increased awareness, I pray that increased acceptance and inclusion will follow. Here are a few pics of us, family and friends wearing our Team Caleb shirts today! Thanks to those of you who sent me your photos or tagged me on social media! We love you all! 

Team Caleb - World Down Syndrome Day

This Saturday, March 21st is World Down Syndrome Day. This day is set aside to raise awareness for people with Down syndrome. Our family will be wearing our "Team Caleb" shirts as we go about our Saturday activities. 

We've seen several times that, when wearing these shirts, people stop and ask us what "Team Caleb" is. It opens up a great opportunity for us to share about Down syndrome and, more specifically, our precious son! If you purchased a Team Caleb shirt in 2013 or 2014, will you join us by wearing it this Saturday? 

2013 shirt


2014 shirt

24 Month Recap

Well, this post is more than two weeks late... but better late than never, right?  

Weight: 22 lbs, 8 oz

Length: 30.5"

Clothing size: Mostly 18 month, but he does wear a few 24 month shirts. He still wears size 3 infant shoes, and he wears size 4 with his SureSteps.

Diaper size: size 4

Eating: Some of Caleb's favorite foods are blueberry pancakes, raisins, string cheese, mac & cheese, mandarin oranges, grilled cheese sandwiches, pizza, Goldfish crackers, Teddy Grahams, and Annies Bunnies crackers. Caleb drinks all of his milk with the Talk Tools Straw #1 and Take & Toss straw cups. He drinks water from Munchkin Click Lock Insulated Straw Cups

Sleeping: Caleb goes to sleep around 8:00pm and wakes up around 7:00am. He usually takes one nap in the early afternoon. He usually sleeps about 1.5-2 hours. 

His days: Caleb still goes to Mother's Day Out three times each week. He also does several hours of speech, occupational, and physical therapies each week. 

Highlights of the last three months: Caleb is crawling, pulling up, and cruising! He walks while holding onto our hands and occasionally while holding on to a push toy. He says about 25 words (some don't sound quite recognizable to others, but Brad and I know what he's saying), and he signs about 30 words! 

Caleb has twelve teeth now. The only ones he's missing are his four canines and his four two-year molars.

And here are Caleb's final white onesie chair pics...

Down Syndrome Festival & 5k

Yesterday morning, we attended the Down Syndrome Festival and 5k in downtown OKC. Brad, along with several of our family and friends, did the 5k. Since I'm still not cleared by my doctor to resume running, Caleb and I joined everyone a little later for the awareness walk and festival. Team Caleb raised over $3600 for the Down Syndrome Association of Central Oklahoma! We surpassed last year's total by $700! Thanks to everyone who donated!

Brad and some of his co-workers after the 5k

One of Brad's college friends got 2nd place in his division! Nice job, Matt!

Having fun in the playroom. The clinic where Caleb does OT volunteers in and supplies all the toys/activities for this room every year!

Caleb liked the two-week old goats at the petting zoo.

He wasn't feeling 100% (teething, I think), but we still had a wonderful time. 

Goodbye Summer

Several cold fronts have been coming in over the last few days. While not officially fall for another week and a half, it certainly feels like it today. 

Even though Caleb's not in "real" school yet, the new school year brings lots of changes for us. Several of his therapists are either parents (so their schedules change to accommodate their own kids) or they work part-time in the schools. It's always crazy trying to piece together Caleb's schedule into something that works for us. What we've got going now seems pretty good, though we did have to give up some fun stuff like story time at the library. I'm still working part-time while Caleb goes to Mother's Day Out on Mondays, Wednesdays and Fridays. Caleb does speech therapy first thing on Monday mornings, before we go to work and MDO. On Tuesdays, Caleb has PT and OT. We also try to run errands or go to the park on Tuesdays. On Thursdays, Caleb does PT in the morning and then we head to the church so that I can participate in a Bible study. Caleb gets to play with his friends in the nursery while I take a couple hours to study and fellowship with other young moms at my church. Our Thursday afternoons look different from week to week. Sometimes we have an extra session of PT or speech, and sometimes we just enjoy some play time at home. Now that the weather is cooling down, I'm hoping that Thursdays (after nap) will be a good opportunity to go to the zoo.

Brad and I have talked about how we'll have to take a serious look at Caleb's busy therapy schedule (and therefore my busy schedule) as we get closer to Baby #2's arrival. I don't want to cut back on any of the things we're doing, but I know that we will probably need to. Caleb is in what we've been calling a " developmental explosion" lately. For now, I'm going to focus on all the exciting new things he's doing/saying each day, and we'll figure out the rest as we go. 

As for other changes...

Baby #2 is growing and making his presence known. The baby bump is starting to become noticeable to more people than just me. Brad got my maternity clothes out of the attic a few days ago, and I plan to get them washed and ready to wear sometime within the next few weeks. The baby is moving around a lot, and I feel him a little more each day. If this little guy is anything like his older brother, he will soon figure out that it's "fun" to get really active or have hiccups right as I'm ready to go to sleep. 

And my younger brother is gone for at least a year. We spent this past weekend with him in Texas and took him to the airport on Sunday. After a month of training, he will head to east Africa with the Navy Reserve. We're sad to see him go (even though he's excited about it!) and can't wait for his return sometime next fall.

Down Syndrome Festival and 5k - 15 days away!

15 days until the Down Syndrome Festival and 5k! 

To register for the 5k, please follow the link below and select "5K registration supporting specific team or individual (shirt included) - $35.00". 

If you aren't doing the 5k but plan to attend the festival and walk the one commemorative lap with Team Caleb, please follow the link below and select either "Walking ONE LAP around ballpark with/for team or individual - $0.00" or "Walking ONE LAP around ballpark with/for team or individual (with one event shirt) - $10.00".

Team Caleb will have a group photo taken at 10:45am during the festival.

Team Caleb shirts have been ordered and should be ready a few days before the Festival and 5k. I'll let you all know when they're in! The event shirts that you get with the 5k or walk registration are not the same as the Team Caleb shirts that I ordered earlier this week.

https://secure.ezeventsolutions.com/fr/DSACO/2014Walk/TeamCaleb

On the Move

It's hard to believe crawling was so hard for Caleb just a few weeks ago!