Last week I invited all you Curious-Catherines to send me your questions and queries about life with spina bifida. And I got some great ones so bravo, you!
Some of the questions are easy, some will be a challenge, and a few are real doozies. So, I’m nestled down in my bed with a glass of red wine on the bedside table for support (just in case– never hurts to be prepared) and I’ll do my best to answer honestly.
Let’s get this party started.
Lauren asked: Will Simeon need the trach forever?
We hope not. Simeon’s doc estimates that he will need the trach for 1 to 2 years. We’re at 1 year and 2 months right now. Simeon wears a cap over his trach during the day, which basically means that he is not breathing through it when he’s awake. Unfortunately, his primary issue is sleep related (obstructive sleep apnea) so when he falls asleep he still needs the cap to be removed so he can breathe. Interestingly, obstructive sleep apnea is not terribly common in children with spina bifida. But we like to keep things extra-ordinary around here.
Anonymous asked: When did you find out? 20 weeks into my pregnancy. What does he eat? Everything. No kidding. This kid eats everything. Including paper, twigs, and the occasional dead moth. But I think his love language is ice-cream. We try to stay away from grains and starches that could constipate him, so Sim eats lots of veggies, fruits, and proteins. Diapers for life? Sheesh. I hope not, but funny you should ask because the next question is all about that.
Shannon asked: How are you (and Simeon) managing with bowel and bladder control?
Welcome to spina bifida world! Where mothers discuss poop like hipster mixologists discuss homemade bitters. Seriously. Poop is big around here (tee hee) so I’m glad someone finally asked me to talk about it.
Most children and adults with SB deal with some bowel and bladder control issues because these functions (like so many others) are controlled by the spinal cord.
Let me begin by saying that we are lucky (for now) because unlike many children with SB, Simeon does not need to be catheterized in order to relieve himself. Once he reaches school-age, there are procedures and medications that can allow him to gain continence so that we can avoid a diapers-4-life situation. So, for now, we’re sittin’ pretty in the pee-pee department.
As for “number 2,” we’ve stayed pretty regular by using a good mix of prune juice, fractionated Aloe, and something I like to call “The Pooper’s Delight” (Greek yogurt blended with an ungodly amount of dried plums– aka prunes, which BTW Sunsweet Corporation, you’re not fooling anyone with this “dried plum” business). Again, as Simeon gets older and diapers become a less-than desirable fashion statement, there are procedures and treatments to help school-age kids stay regular and avoid accidents. Most people with SB are on some kind of bowel program– meaning they have a bathroom routine that allows them to remain socially continent.
Jessica asked: What was your first thought when you found out that your baby was going to have a disability? I wrote a lot about those first few moments HERE and HERE but if I had to name my very first thought it would probably be “take a deep breath” followed by “this can’t be happening.” Interestingly, I asked Greg what his answer would be and he said “I thought: ‘that is my son and why is this happening to him?'” Basically the exact opposite of my reaction. It reminds me of why I wrote this post about Greg and what an amazing father he’s been through all this.
And… Why did you choose his name, is there a special story behind it? The name Simeon comes from the New Testament story you can read HERE. St. Simeon is remembered frequently in the Orthodox Church and his prayer is said during each Saturday Vespers service. St. Simeon is known for being one of the first men to recognize Jesus as the Messiah. In icons of St. Simeon, he is holding the Christ child in his arms. Orthodox Christians are given a patron saint and we felt that St. Simeon– a Godly man who recognized Christ even as an infant, who was known for his patience, and for what his arms carried, would be a fitting patron for our son. We named Simeon on the same day that we received his diagnosis.
|St. Simeon the God Receiver|
That’s all for now. We’ll meet back here for more Q & A next week. And remember that you can still submit your questions HERE.