I’m so sorry! I’ve been MIA for way too long. Ya see… what had happened was….
I know, I say this all the time. I’ve been so incredibly busy. I know you all have been super busy, too. So don’t go blaming all of this on me. Alright, so what’s been happening here in the world of special needs parenting? Paperwork!! It’s my 2nd job. Well, maybe my third? Fourth? Who knows? I can’t remember anymore, I have so many jobs these days.
We’ve been working with Ri’s care coordinator pretty frequently over the last few months. I know I’ve mentioned it before, but she is A-MAZ-ING. Seriously, I don’t know where I would be on this journey without her in my life.
Are you thinking, “what’s a care coordinator?” Yeah, I thought that too when I first heard about this sweet angel. The role of the care coordinator is to help us parents find services for our child with different needs, work with insurance to help make sure we have coverage and find alternatives when we’re not covered.
So where does one find this kind soul? Our wonderful human works with our pediatrician’s office. Every single time we meet with her, the world just seems a little brighter. This isn’t even close to being sarcasm. She’s a ray of sunshine on this occasionally dark, and sometimes lonely road we find ourselves on.
Let me just tell you about some of the amazing things that have happened. If you’ve read my story over here on my about page, and have been following me for some time, you may know some of our challenges. Riley has very little head control and struggles to keep it up for more than a second or two without support. Having a stroller is great, but this little girl isn’t getting any smaller. We were in need of a wheelchair, and our insurance company kept denying coverage each time we tried and retried to get one insurance would approve.
After six months of back and forth with insurance, our care coordinator started to work with us, insurance and simultaneously on the side with a foundation. After a year going back and forth with insurance, she was able to order us a wheelchair, just not with insurance, but through the foundation. This chair was graciously donated to Riley.
We’re currently working on getting a medical bed, as Ri is still safely sleeping in her crib. I can hear the gasps now. “OMG! You have your 4-year-old in a crib still?!?!?” Yup. Sure do. She’s safest there. She likes to swing her arms and legs around a lot, and she’s working on rolling over. I wouldn’t want my little girl to fall out of a bed. She has very little control over her limbs either. There is no way she could brace herself if she were to fall.
There’s also the issue of a changing table. Riley will most likely never go through potty training and will need changing. Like I said, and you’ll keep hearing from me, she’s not getting any smaller. That means it’s getting harder and more unsafe to continue to use our current system of changing her. Besides, our backs hurt.
The bed will help with changing her, as we’re hoping that we can get one that raises and lowers. Please, please, please save our backs!
While we’re on the subject of changing diapers… on the list of current to dos, our coordinator has also obtained a prescription to get diapers, we’re just waiting to hear from the company to get on the bandwagon.
Also on the list, an upgraded way to bath Riley. We currently use a mesh chair in the shower. When we were building the house, we were able to get the plans modified to include a roll-in and expanded shower for Riley. Now we just need something to roll her from the bed to the shower and then back to the bed. Again, save our backs!! The chair we’re using causes us to have to bend over to bath her the entire shower. My back is hurting now just thinking about it.
The coordinator can also help with services, such as OT, ST, and PT. She even mentioned once that she was able to get a pool partially covered for one of her families because of the water therapy benefits.
Please reach out to your pediatrician’s office. I know I’ve talked about this in previous posts, but it’s just so important to get support for your family. With the help of someone with experience, I have to mention it again (and again…) and dedicate an entire post to the unsung hero, the care coordinator.
In addition to everything I’ve already said, this truly wonderful woman loves on Riley so much, that it makes my heart melt. Everyone needs a person like this in their life.
I’m so blessed to have so many wonderful people in my life helping our family. Family, friends, co-workers, the amazing medical professionals that help my daughter, the incredible teachers that make Riley smile… I’m just simply blessed.
Now back to paperwork, the 9-5, crafting world, mom-life, wife-life, and travel-life, printables, and maybe, just maybe, I’ll get a few minutes for me.
Stay sane, my friends! And get with a care coordinator!! Your life will be better because of it.