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
I prayed for this child, and the Lord has granted me what I asked of him. - 1 Samuel 1:27
Sunday, March 19, 2017
Friday, March 17, 2017
Another Five Minute Friday
And the five minutes starts now...
We're now on post-op day 10. Caleb is starting to show some improvement. He's drinking more and willing to take a few bites of soft foods every now and then. He also seems happier throughout the day and sleeping a little better at night, so I think the pain is starting to go away.
We're wrapping up Spring Break here. The boys were off from school and MDO (not that Caleb would've felt like being at school this week anyway). Brad and I still needed to work, so family watched the boys for us while I worked on Monday and Wednesday. Brad and I are tag-teaming today. I'm working this morning, and Brad is working this afternoon.
I have a couple fun things planned for this weekend. I'm going to a baby shower for a friend tomorrow. Her first child, a son, was born in October 2015. He had a congenital heart defect and only lived three days. Now she's expecting another precious little boy, and he's due on Easter Sunday. I'm so excited to celebrate with her tomorrow. And then on Sunday, I'm running the Go Girl half marathon here in OKC!
Time's up!
We're now on post-op day 10. Caleb is starting to show some improvement. He's drinking more and willing to take a few bites of soft foods every now and then. He also seems happier throughout the day and sleeping a little better at night, so I think the pain is starting to go away.
We're wrapping up Spring Break here. The boys were off from school and MDO (not that Caleb would've felt like being at school this week anyway). Brad and I still needed to work, so family watched the boys for us while I worked on Monday and Wednesday. Brad and I are tag-teaming today. I'm working this morning, and Brad is working this afternoon.
I have a couple fun things planned for this weekend. I'm going to a baby shower for a friend tomorrow. Her first child, a son, was born in October 2015. He had a congenital heart defect and only lived three days. Now she's expecting another precious little boy, and he's due on Easter Sunday. I'm so excited to celebrate with her tomorrow. And then on Sunday, I'm running the Go Girl half marathon here in OKC!
Time's up!
Wednesday, March 15, 2017
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.
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.
Wednesday, March 8, 2017
Sleep Apnea
At Caleb's four year well-check in October, the pediatrician and I went line-by-line through the AAP guide for children with Down syndrome. One of the things mentioned is sleep issues, and the AAP recommends a sleep study by the age of four. Caleb hadn't had one yet, so the pediatrician ordered one. I took him to the sleep clinic at the local childrens hospital in December. That was a rough night, but he slept enough that they were able to get some good data. From that sleep study, we learned that he has sleep apnea. We also learned that there are basically two types of events that indicate the severity of sleep apnea. Apnea is a suspension or pause in breathing...thank goodness, Caleb didn't have any apnea events. He did have several hypopnea events though. Hypopnea is a overly shallow breathing and/or low respiratory rate. Caleb's ENT recommended Caleb have his tonsils and adenoids removed, so that leads us to today!
Caleb's tonsils and adenoids weren't particularly enlarged, but the ENT said that would be the first (and easiest) thing to try to help remedy the sleep apnea. While in the OR today, the ENT used a scope to watch Caleb's airway as he fell asleep. He didn't see any obstructions, but he said Caleb's airway is incredibly narrow. Getting the tonsils and adenoids out should make some room in that airway and help him breathe easier. He also checked Caleb's ears and put a new tube in his right ear. The tube in his left ear was still in position and open.
Caleb did great waking up from anesthesia. He seemed comfortable and content watching a movie on his Kindle. About an hour later, we moved to a room on the pediatrics floor. Caleb took a good nap, Tyler came by for a visit, and then Caleb ate a decent dinner (soup, pudding, mashed potatoes, more pudding, yogurt and milk). Brad and Tyler went home a little while ago, so now Caleb and I are getting settled in for the evening and will hopefully go to bed before long. Assuming everything goes okay tonight, the plan is to go home tomorrow morning. Caleb will do another sleep study in a few months to see if today's surgery took care of the sleep apnea.
Friday, March 3, 2017
How to Treat Kids Who Are Different
I want to share with you two recent blog posts from our friend, Ashley. She is mom to Finn and Paisley and wife to Joey. Brad went to college with Ashley and Joey. I met Finn and and Joey at a graduation party for a mutual friend while I was pregnant with Caleb. Meeting them is one of a couple moments I recall during my pregnancy that I think God was preparing me for the "special needs parenting" journey we unknowingly had ahead. I remember watching Joey be the most amazing dad to Baby Finn. And I also remember thinking "I bet that's so hard. There's no way I could do that."
Fast forward a few months and they were one of the first to visit us while Caleb was in the NICU. They brought us a meal. They listened to our worries/concerns, shared advice, cried and prayed with us. We don't see each other often since we live a few hours apart, but I always enjoy reading her blog. I've learned so much from her, and I hope you will too!
https://ourinvinciblesummers.wordpress.com/2017/02/27/how-to-treat-kids-who-are-different-part-i/
https://ourinvinciblesummers.wordpress.com/2017/03/02/how-to-treat-kids-who-are-different-part-ii/
Fast forward a few months and they were one of the first to visit us while Caleb was in the NICU. They brought us a meal. They listened to our worries/concerns, shared advice, cried and prayed with us. We don't see each other often since we live a few hours apart, but I always enjoy reading her blog. I've learned so much from her, and I hope you will too!
https://ourinvinciblesummers.wordpress.com/2017/02/27/how-to-treat-kids-who-are-different-part-i/
https://ourinvinciblesummers.wordpress.com/2017/03/02/how-to-treat-kids-who-are-different-part-ii/
Five Minute Friday
I was inspired to write this "Five Minute Friday" after seeing a friend's similar post on her blog. So here's the deal with Five Minute Friday... set the timer for five minutes and just write...
I'm at work, just sneaking a quick break to grab a bite to eat and jot down a few thoughts. My car is packed and as soon as work is done, I'll pick up the boys from MDO and head south with them to visit my parents in Texas for the weekend. The boys can't wait to spend some time with their grandparents. And I'm running a half marathon tomorrow morning... my eighth. I'll run my ninth in a couple weeks, and I'll run my tenth at the end of April. I'm SO looking forward to finishing that tenth. 10 has been a big goal ever since probably 2 or 3, so I'm excited about getting there soon. After that, I'm not sure what my next running goal will be. I'm afraid to stop and lose all I've worked so hard for... but I think I'm also ready for a little break. Wow... five minutes goes really fast! Back to work...
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