Well, folks, I dropped the ball on this one, but one of you was kind enough to inquire as to how our trip last month went to the Orthopedic Surgeon. We were so invovled in our damage at our house, plus massive problems with a rental house that we have (that we wish we could sell – love the housing market these days!) that I totally forgot a major component of our Scoliosis adventure. Well, if there had been great or devastating news, I guess I would probably have posted, but it was THE SAME. BOTH my kids’ curves are THE SAME (Daughter approx 55, Son approx 25). This is great (that they have not gotten worse)! But, this is also a bit disheartening since after my daughter went into her Cheneau she got major improvement on her curve, and my son didn’t experience any (this is his first visit since he went into his brace). *sigh*. But, who knows if the brace prevented all sorts of advancement in his curve…that is the tricky thing about this disease – a parent can postulate and theorize, but one can never know for sure what is working and what is not, especially if you are trying multiple therapies at once. Any good Scientist will tell you to only introduce one variable at a time – well, when you are crunched for time, sometimes patients do the shotgun approach to treatments. I know that we do, and we just pray that SOMETHING, or a few things, in our arsenal will work for us. One thing we are trying to do better in the chaos of our summer is to have the kids do muscle building exercises every other day. This will help them keep up their natural muscle strength to help compensate for the time in brace. I put my husband in charge of that – he is, after all, an experienced coach, weight lifter, and athletic director. Of course, he needs to REMEMBER TO DO IT! I think he has an abdominal routine for them and we are re-incorporating some of the exercises our daughter got way back when she was doing the Spinecor physical therapy visits to the University Of Michigan PT department. He’s going to slowly build on to their routine so he can just say, “go do your exercises”, and they’ll know what to do. This is THEORETICALLY how it’s supposed to go. Anyway, in the summer it’s hard because life is in utter chaos, but we try. and try. and try again. So, keep working on it, people – it’s a LONG haul when dealing with Scoliosis. Just know we are trudging along with you…
In the past couple years that my children have been in rigid braces, we’ve only had a problem with a sore ONCE. Naturally, my first bit of advice is to make sure their skin is protected from the brace with a soft, beautiful bodysuit that covers all the contact points, like those we make at: http://www.embracedincomfort.com (pardon the shameless plug, but it’s true) 🙂 But, as we found, sores can occur even in the best situation, and they can be a bit scary. I think what caused the one my daughter had was her hip bone area hitting the incorrect part of her brace because the brace was getting too small for her. It would not go away, though, and we became a bit concerned. The sores patients can get under braces resemble a mild form of bedsore, so if left untreated, it can become quite a problem. Bedsores that escalate can go all the way through the muscle and to the bone and potentially become infected. Ouch!! The first bit of advice when dealing with a bedsore is to relieve the pressure on the skin, so we were just about to have her spend a few days out of her brace (which is also a bit scary), when my husband remembered our “miracle cream”. Our “miracle cream” was recommended to us by our Pediatrician when my daughter was a baby. We used cloth diapers and she developed a heck of a rash. This cream worked WONDERS to clear it up. Later, when the kids got older, we still used it – to treat itchy mosquito bites or my son’s occasional skin rashes (from his eczema). So, I ran and got the cream, we applied a generous amount to the sore, she put her bodysuit on over the cream (and under the brace), and by morning it was halfway gone. By the next day – gone. And, that bugger had persisted for weeks and weeks!! What was our “miracle cream”? It’s called Calmoseptine Ointment, and can be found via this link: http://www.drugstore.com/calmoseptine-ointment-to-prevent-and-heal-skin-irritations/qxp206176?fromsrch=Calmoseptine. Our local drug stores did not sell it, so I had to order online. At first glance, $10 for 4 oz can seem expensive, but you use VERY LITTLE. This cream is ultra thick and creamy and you really only need to dab small amounts. I think we are still on our first tube and I bought it to use as a diaper cream 9 years ago. It has .44% Menthol (which is an analgesic and first aid ointment) and 20.625% Zinc Oxide (for skin protection and a moisture barrier). Our pediatrician said it was safe to use on our baby, so I assume it’s safe for all ages. The other day I was conversing with another Mom of a scoliosis patient, and she also recommended Duoderm patches (http://www.walgreens.com/store/c/duoderm/ID=306676-brand). These are expensive, but she said they work great. Her sister, who is a nurse, recommended them after seeing how they work in a hospital setting on patients with bedsores. There is a lot of information out there on bedsores and treatment, but these are just two ideas, tested by other Moms of kids in Scoliosis braces. I hope they can help you, too.
Hi everyone. I hope you all are enjoying your summer. I’ve had a very busy time. We went on vacation this year to the same place we go every year – a family reunion for my Dad’s side of the family. We’ve been going for 27 years and I hope we don’t have to stop anytime soon. Do you ever notice that it seems to take weeks to ramp up to vacation, then weeks to recover? If you go on a couple of vacations during the summer months, the time can get eaten up quickly. Plus, we had the highest volume of orders for any month that we’ve been in business. Which is great news, but we were TIRED. 🙂 Seriously, I hope the word continues to get out about our effort to help patients in Scoliosis (and other types) of braces be more comfortable.
The most challenging time for us as a family dealing with wearing braces, for sure, is in the summer months. It’s hot and the kids want to run around with bathing suits on and swim or run through sprinklers. They DON’T want to be encased in a shell of plastic! But, it’s a necessary evil and, although we stay pretty close to our 22 hours of recommended time a day, I have to admit that my kids don’t always make it. Some days they are off by a lot. But, in the winter they are in it 22-24 hours a day, so I figure it averages out. I’ve had other parents ask me what we do to combat the heat, and I wish we had a better solution. Maybe one day I will know enough to create an air-conditioned garment for them to wear, but for now, I just do what you probably think to do – keep them out of the hottest part of the day, have lots of ice water and beverages, take time out every day to swim and cool off, and just DO OUR BEST. I’ve added a new product to my website that may help. I’ve developed a sleeveless Brace-Tee that has an armpit shield, so it will protect the armpits against rubbing from the brace, while allowing kids to wear sleeveless shirts without (much) showing underneath. You can find it on my website at: http://embracedinco660.corecommerce.com/Other-Solutions/Sleeveless-Tee-with-Underarm-Shield-p16.html Patients are loving it. It works similar to the Knit-Rite brand, but the fabric is our soft, absorbant organic cotton blend, so it’s a bit thinner for hotter weather. I hope it can help patients find relief on many levels.
Back to my family vacation time, though, one of the most special times of the annual trip is when my grandfather leads a family vesper service by the campfire. We pay tribute to the flag, sing songs to the Lord, and, when it’s all over – eat smores! 🙂 We also take a moment to recognize the service men and women who continue to fight to keep our country safe and give us the freedom to eat smores while leisurely sitting around a campfire! God Bless You!!! P.S. The man pledging allegiance to the flag in the banner photo is my Grandfather – a World War 2 veteran and a wonderful Christian leader to his family for 60+ years now. I just love that man! 🙂