Apollo Update {Two Months Post Surgery}

posted in: Apollo, Special Needs | 8

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It has been two months since Apollo’s second double aortic arch division, and the surgery to removed the diverticulum compressing his esophagus.

His incision has healed very well. About a month ago he started choking on his food again. Every day. Naturally we cut back on giving him hard foods (carrots and apples) but he continued to choke on softer foods as well. I added back in his first tube feeding of the day (something I was able to drop when we came home from Texas because he was eating so well). Now he is choking much less frequently, but as my children pointed out, he is also eating less. Apollo has a swallow study scheduled for January 3, which will let us know if there is compression causing him to choke, or if he just needs to “learn” to eat better.

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Apollo is sleeping much better. We quit using the Melatonin (which he’d been taking for nine months straight) when a few of you readers suggested it might be the cause of his nightmares. I can’t say for sure whether it worked. He is sleeping better and is only have nightmares about once a week now. Unfortunately, he is now not falling asleep until ten or later. We have made a few changes. Apollo now has a twin sized mattress on the floor, so Chuck or I can lay down with him in his bed. We bought this Cloud b Twilight Turtle nightlight. It projects stars (and a moon) on the ceiling for 45 minutes, then automatically shuts off. The light is perfect, enough for a child to see, but not so much that it would keep them awake. It is very soft and gentle and projects in several different colors.

Soon, soon, we will teach him to go to sleep in his own bed. Alone. Because I know it will take a few miserable nights and a whole lot of stamina, I don’t plan to begin until we are 100% ready to stick with it. 122812_8909 bw blogApollo continues to be a  chatterbox. The doctors and nurses in Texas couldn’t get over his vocabulary and conversational skills. He recently made his first joke! We were sitting at the table and someone commented on the bottle of ibuprofen I had set down. Avi asked if she could have one (just being silly) and I said, “No, you can have some Avi-profen!” Apollo piped up from the other end of the table, “I want some Pallo-profen!

Overall, he is doing very, very well.  He is officially 2 1/2 years old! He takes about 800 mls of food through his tube a day. All of his chest x-rays have been clear, so we are finally able to let him eat without counting each gram of fat. We can allow him to have fat-filled food my mouth.

Here’s looking to a happy and healthy 2013.

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8 Responses

  1. Kimberly

    Glad the news is mostly good, although the choking thing is no fun. Here’s hoping he just needs to relearn to eat! Wishing you all a happy and healthy 2013!

  2. Judy Small

    I don’t know if it’s the age, personality, or what, but we have to do the same thing with Courtney. She easily stays up until after 10pm, and doesn’t seem at all tired. She takes a fairly short nap (1-2 hours) in the early afternoon. She tells us that she is scared at night, and it works best if one of us lays with her for awhile. We play music in her room and keep a light on dimly, and remind her that God is with her, we are nearby, Abby is in the room with her, Ryan is next door, etc., but those things don’t help assuage her fears any more. I might try the nightlight you got for Apollo.

    • bakersdozenandapolloxiv

      Judy- I agree, part of it is just the age. In Apollo’s case it’s just complicated by his medical issues. We have always fought the bedtime battles early on with our kids so by 2 it was a non-issue.

  3. Elizabeth

    It’s discouraging to hear about him choking again. I’m glad though that at this point that’s not as big as a crisis as it was, considering he can eat through his tube. Does his breathing ever get labored and raspy like it did?

  4. Allie

    We just got a twilight turtle and we love it. It really helps our baby get to sleep better, more often, and faster.

    Allie
    Learningtobefrugal.com

  5. Aks

    I know that having a kid sleep on their own is important, but for a ‘last’ kid, there may be a lot of different issues. My daughter was so so busy when she was a toddler, being pulled in so many different directions because of her brothers, that it seemed that she needed the literal connection that she got when we shared a ‘family’ bed. As your son becomes more active and engaged with his siblings, he might still need the connection with you. Even if you are both asleep, it is important.

    life was so busy when my daughter was that age, and she was thriving with the constant activities of siblings, but I believe that she was so well adjusted (and still is) because she experienced extended co-sleeping. I think she nursed ’til 3 or so, but that was minor. I believe the co-sleeping (age 4-6?) was grounding.

    • bakersdozenandapolloxiv

      Aks- Thanks for your response. I found it very thought provoking. I recently mentioned to Chuck how we *need* to get Apollo sleeping in his own bed alone…he didn’t see it as nearly as important. He is happy to sleep with him if need be. Then I realized *I* just need more sleep- however that works out. Right now, he spends half the nights in bed with us and half in bed with Kalina.

  6. Katie

    My cousin mentioned “co-sleeping” and “family bed” (which I was unfamiliar with) to me not too long ago and made the comment “we teach kids to sleep alone in a bed so they can grow up and marry someone and never sleep alone in a bed again” … I found that very thought provoking as well. Just wanted to share. 🙂 (I know it’s more complicated than that, that there is stuff about bonding/attachment, as well as self-soothing in the process of sleeping alone, but still, a very interesting idea. As well as the fact that many other cultures do not force/endorse children sleeping alone. Just food for thought!)

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