Buddy Walk

The Buddy Walk is a national program that promotes understanding and acceptance of people with Down syndrome. The Down Syndrome Association of Central Oklahoma will have their annual Buddy Walk on Saturday, October 19th at the Chickasaw Bricktown Ballpark in Oklahoma City. This is the main fundraiser for DSACO, and we are so excited to participate in it this year!

The Buddy Walk begins at 9:00am. Activities will include raffles, moon bounces, petting zoo, games, music, and much more! At noon, all attendees will walk one lap around the block outside the Chickasaw Bricktown Ballpark to show their support for acceptance and inclusion for people with Down syndrome. If you would like to join our team, click HERE.

To donate to our team's fundraising efforts, click HERE or use the donation tool on the right side of this blog page (not available on the Blogger mobile site... sorry!).

In addition to the Buddy Walk, there will be a Run for T21 5k beginning at 8:00am. Registration is $30. Each participant receives a Run for T21 t-shirt, and all finishers will get a medal. Runners and walkers of all ages are encouraged to participate. Click HERE To register for the 5k.

Several months ago, a good friend designed shirts for my marathon relay team. We are using the same shirt design for our Buddy Walk team. If you'd like to order one, please comment below or email me. I need shirt orders by Sunday, September 29th. The shirt is moisture wicking and 100% polyester. $12.50/each.

Ten Month Recap

Weight: 16lb 8oz 

Length: 26.5"

Clothing size: 6-9 month

Diaper size: size 3

Eating: Caleb takes four bottles (6-7oz) each day, and he eats three times/day. For breakfast (around 8:00am), he usually eats fruit puree, yogurt, and rice cereal. For lunch (which is actually around 3:30-4:00pm), he usually eats veggie and/or fruit purees. And for dinner (around 5:00-6:00pm), he usually eats meat/veggie purees. He will occasionally eat Puffs or Cheerios, but he isn't too fond of them yet. He's seems to enjoy drinking from his Honey Bear Straw Cup, but he drinks a lot faster than he swallows. It's quite a mess, but we keep practicing! 

Sleeping: Caleb usually goes to sleep around 7:30-8:00pm and wakes up around 6:30-7:00am. He usually naps a couple times during the day. His naps are anywhere from 0.5-2 hours. If we're at home, he usually naps while I hold him. He's great about falling asleep in the car when we're heading home from appointments, so I now to try schedule appointments before nap time!

Highlights of the month: Rolling from his back to his tummy, babbling more (M, N, B, and L sounds!), and getting good reports about his hearing and vision!

Six Months Post-op

Caleb had a cardiology check up yesterday. It's been a little more than six months since surgery and about three months since Caleb was on supplemental oxygen. After reading Caleb's ECG and echo results, the cardiologist said that Caleb's heart looks great! He no longer has pulmonary hypertension, and we were given the "go ahead" to wean him off of his pulmonary hypertension medicine! We've been giving it to him three times/day since we left the hospital in Dallas back in February. We were able to move to twice/day yesterday, and we'll go to once daily in three weeks! And after another three weeks, we'll be done! We go back to the cardiologist next February for his one year post-op appointment!

Mother's Day Out

Today was Caleb's first day at Mother's Day Out!

 

The first of many "first day of school" photos!

 

That big smile was hard to leave, but at least he seemed happy in the arms of his new teacher.

Normal Range

We took Caleb to have his hearing checked on Friday. It has been a month since his last check and two months since his tubes placement... two months since an audiologist at the local childrens hospital told us that Caleb had mild-moderate hearing loss and needed to get hearing aids. You might remember that rather than going forward with the audiologist at the childrens hospital, we chose to take Caleb back to the audiologist he had been seeing since shortly after he was born. At his next appointment with his regular audiologist, we were told that there might be some hearing loss but no need for hearing aids yet. So back to his appointment on Friday... Caleb responded to most of the sounds/tones by turning his head toward the direction of the sound (which is what we want him doing). The few times that he didn't turn his head, he at least shifted his eyes toward the sound or raised his eye brows. All of those were indications that he did hear the sounds. The audiologist and speech pathologist were so pleased! All of the testing came back within normal range! He will have his hearing checked again in three months!

For the rest of the day, I kept trying to make sense of why we had been told by the other audiologist that he needed hearing aids and why he now has normal hearing. Was there some flaw or miscalculation in one of the tests? Did the audiologist at the childrens hospital just want us to get hearing aids to meet some quota or to bill our insurance? (I've probably watched too many episodes of "60 Minutes".) 

It was during my run the next morning that I finally stopped searching for answers or trying to make sense of it all. I finally realized that God healed Caleb's ears. I have prayed for the last nine months that Caleb's hearing would be restored, and He did it! Thanks to those of you who have prayed with me these last several months. And most of all, thanks to our Lord for the amazing work You've done and continue to do.

Jesus replied, "Go back and report to John what you hear and see: The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. - Matthew 11:4-5

O LORD my God, I called to you for help and you healed me. - Psalm 30:2

Nine month photos

Here are a few of my favorites from Caleb's nine month photo session by Tammy Hall.

Kanga Boo

I've been meaning to write this product review for several weeks now, and I just haven't gotten around to writing all of my thoughts down. I didn't want to delay posting about it any longer, though, so here are some brief thoughts about the Kanga Boo.

http://thekangaboo.com/

I learned about the product months ago after reading a similar review from another mom of a little boy who has Down syndrome. She raved about the product, and I immediately wanted one for Caleb. He's not quite strong enough to sit in a shopping cart on his own, but the Kanga Boo gives him that extra support he needs around his torso. 

The website says that it folds flat enough to store in the diaper bag, but I guess I just keep way too much other stuff in there! I have no extra room in my bag! I keep our Kanga Boo in the floor of my Jeep, right below Caleb's car seat. It's convenient enough for me to grab before we head into the store. 

If you order one, get the toy loops! Caleb is usually content to just look around and smile at other shoppers, but I like having a toy handy for when he decides that he's "done" with shopping.

First Eye Exam

Caleb had his first eye exam yesterday. Children with Down syndrome often have eye problems, including tear duct abnormalities, strabismus (eye misalignment), early age cataracts, and many other conditions. As with all other health issues, early diagnosis and intervention is best. I didn't suspect any issues with his eyes, but it was still good to get everything checked.

He cried when the nurse put drops in his eyes, but he calmed down and was cooperative for the rest of the appointment. I was thrilled to hear that Caleb's eyes are perfect! No signs of cataracts or astigmatism. His left eye is +2.5, and his right is +2.0. The doctor said they're both right in line with what a typical baby's eyes should be. He told me that babies are born far-sighted, and the eyes gradually adjust to "normal or zero" by about age 16. He'll go back in a year for his next exam.

Five years

Happy fifth anniversary, Brad! Thank you for being such an amazing husband, father and leader of our family. 

Oral Motor Therapy

As I mentioned in an earlier post, we recently went to San Antonio and New Braunfels. The New Braunfels portion of our trip was to meet with a speech and language pathologist there. At DSACO's annual conference in April, we met one of the speakers. Renee Roy-Hill is a SLP and a course lecturer for Talk Tools Therapy. She did a presentation at the conference for parents of kids ages 0-3 years, and we were so impressed. We left the conference thinking that we had to get Caleb set up with a speech pathologist. After several unsuccessful attempts at trying to get him in with a therapist at a clinic in OKC, we decided to talk to Renee. She said that she could evaluate Caleb and then write a six-month program for us to carry out at home. We set up a two-hour consult for one afternoon in early July and also scheduled a one-hour therapy session for the next day.

A couple weeks before we went to San Antonio, the local therapy clinic called to schedule a speech evaluation. After weeks of calling and two referrals from the pediatrician, they finally got around to calling us! We went to the evaluation and were pleased with the SLP. We told her about our plans to meet with Renee and that we were going to follow her therapy program. The SLP seemed excited about what we were doing and said that she fully supported our decision and would like to work with us to carry out Renee's program... pending insurance approval, of course!

So fast forward to early July and our first session with Renee. She introduced us to several of the Talk Tooks therapy approaches, including drinking from a straw cup rather than a sippy cup. It turns out Caleb is already a pro at sucking through a straw, but he still needs some work on swallowing all of the liquid he sucks. We also learned how to help him drink from a specially designed open cup. Drinking from the cup will help him learn how to swallow more volume at once. Renee taught us some different ways to feed him purees and soft solids. She also showed us some facial stretches and some tools/toys that will help him build strength and good form. I wish I could go into all that we covered, but it was two hours worth of very detailed info!

The next day we returned to her clinic for a one hour session where we were able to ask questions and get a little extra practice. She recorded both sessions and sent the DVDs to us a few days ago. She will send the program soon.

We're still waiting to see if insurance will approve us to do speech therapy with the local therapist. Whether that happens or not, we're busy practicing all the techniques Renee taught us. I can't wait to get Caleb's program from her and really get started with it!

If you want to learn more about Talk Tools, check out their website. Most of the cups, spoons, and tools we use are available for purchase there.