This years topic was a perfect fit for us… "Complimentary Medicine"
As you can imagine the last few months and been filled with some difficulties. Some of which we have overcome, others of which we are still working on. While western medicine can provide us with some answers and prescriptions they simply can not fix everything! One of the biggest problems we have had with Rylie is her sleep… or the lack there of… for as long as we can remember Rylie has never been a good sleeper. We joke that the only time she slept well was when she was a newborn and you all know how much sleep first time parents get. As more NF symptoms presented themselves Rylie's sleep seemed to deteriorate more and more. As an infant we passed it off to sleep training, teething, ear infections… really anything and everything we could think of. It wasn't until Rylie's tumors were diagnosed in February that we realized maybe this sleep issue is related to something else. Sure enough when the MRI confirmed what the doctors already suspected we were told sleep may become an issue (if it hadn't already). You see, we were told children with these types of brain tumors typically fall into one of two categories… they sleep ALOT or the DON'T sleep at all… lucky for us we got the non-sleeper. We've tried a few things but nothing seemed to work and to be honest as a parent knowing your child is sick it doesn't really work when trying the "cry it out" method. She's going through enough as it is, I wasn't about to let her lay in bed and cry hour hours on end (We tried it... once, 3 hours later we were all ready to lose it). So we kept chugging along, sleepless night after sleepless night then on a beautiful Saturday afternoon in September all of our prayers were finally answered!!! Complimentary Medicine… using essential oils and message techniques to help relax and calm even the most stressed out family! It was so nice to have some dedicated time with medical professionals instructing us on the best way to help our girl survive the brutal realities of chemo.
We even had the opportunity to check out some of the tools used during acupuncture and aromatherapy… momma might need to give this a try herself!!!
Acupuncture tool
We spent a great deal of time at the symposium talking about a few oils they felt would be helpful for children with NF (Lavender, Frankincense Tea Tree Oil, and Turmeric). Both the physicians practicing eastern medicine and our team of western medicine doctors felt using the two together could benefit each child differently but greatly. To be honest we were pretty skeptical... We're kind of tough it out people. But, when you watch you child go through something so traumatic month after month your willining to give anything a try. What we did know is we wanted to try it with someone that was experienced and that we trusted. Lucky for us my cousin is a licensed message therapists so we knew just where to go. Lucky for us she was free the very next day. She came over gave us a few pointers, mixed us up some oils, gave us a hug goodnight and wished us good luck.
We also had the amazing opportunity to listen to a few research updated Rylie's Geneticist is working on… i tell you this man is amazing! He cares so much about these kiddos and I know one day with his help we will find a cure for NF! He even helped to write a book for family and friends of kiddos with NF. It's literally the story of our journey, in cartoon form… we can't wait to get a copy!
The AMAZING Dr. V!
So excited to get our copy of Mary's Spots!
We are now one week in and things are getting ether everyday. Rylie is waking up less and less every night and the oils seem to ease her anxiety a little bit. We are still trying different things out but it feels like we're making sone positive changes and moving in the right direction is all anyone could ask for!
We've learned A LOT these last 6 months but the most important lesson I think we've learned is one size DOES NOT fit all! You know your child best! Don't be afraid to ask questions. Don't be afraid to demand answers! Ask for more tests, referrals, and second opinions. This is our baby and we want her to be safe, happy, and Healthy! And, we WILL get there. It's been a long road and I know we have a bit more road to travel but day by day it's getting easier and having a team of professionals we trust surrounding us makes the journey all the easier.
Beautiful morning view from Shriners Hospital is SLC
Sending a little "Good Morning" Hello to our little LadyBug
Wouldn't want to spend the day with anyone else :)
Wouldn't want to spend the day with anyone else :)
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