About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Thursday, May 23, 2013

Pediatric Nurses

One of the things I have mentally struggled with is the idea of needing someone to watch and care for Mira when Joe and I are not available. I couldn't possibly trust a daycare center or a random baby sitter with her needs. It's by no fault of their own, it's simply circumstances that would be out of their depth. They wouldn't possess the training or skills to catheterize her if need be, clean her incisions, keep irritants away from her skin, or let alone understand how to look for all of the symptoms that Joe and I have to constantly be aware of.
Because of this, I've been almost dreading June 24th. June 24th is when I'm scheduled to start college classes back up. I have three more classes until I obtain my first degree. Once I have it, in order to stay on track career-wise, I should begin interning or volunteering during the next two years while I work towards my next degree in order to obtain the experience needed to qualify for my certifications. All I have been thinking about is how in the world am I going to take care of three children, meet Mira's needs, take care of our household, keep up with my classes and start an internship??? Especially when I have no idea who I would even trust to watch Mira on a regular basis?
I reached out to some friends on Facebook that all have special needs children, and through them, I was referred to a nurse that works for an in-home pediatric nursing program. I messaged her, and she was so helpful! She gave me the contact information for her coordinator, along with her own personal contact information so we could speak, as well. I called the coordinator, and she said "I'll be out to see you tomorrow!" I couldn't believe how easy it was and how wonderful every person I spoke to was!
So, the coordinator and a senior nurse came to my home today and we had a little meeting that basically discussed all of Mira's needs, how often I would need a nurse at the home, they did a small exam of Mira to document her incisions, and obtained our insurance information. They'll now do all the footwork for me! They'll obtain the doctor referrals, they'll contact insurance, and they'll let me know roughly at the end of next week if we qualify. I asked if she thought, realistically, whether or not we would qualify through the insurance companies to receive services, and she said that in her experience, she thinks we will!
The peace of mind I would have knowing that a trained medical professional is watching Mira would be such a relief! I could actually study without worrying about her. I could start interning to stay on track to be able to provide for my family in the near future! It would just be wonderful! So any prayers that anyone wants to send up for this to work out would be greatly appreciated by yours truly! 

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