It is NOT okay that my daughter STILL does not have adequate head support even though I have voiced my concern to many health professionals. It’s not okay that I have so many hoops to jump through to try to give my child ability to do a miniscule number of things that my other “normal” child can do. She can’t even turn the pages of a book or hold up her own head without support. How is it okay that it has taken this long to get help? Why is it okay that the stander that she very much needs for her development took so long to get (it’s not even here yet). We had to wait 3 months for an appointment and then it took a couple more months just for insurance to approve one for her. Umm… excuse me but I’m mortified that we have the technology in this country to help kids get into a sitting or standing position with special tools and support but we can’t get these tools to these kids in a timely fashion. Isn’t this the most critical time in their development?
I’m outraged that we don’t have a better system to help families like ours and even more upset that there isn’t more help for families less fortunate. I have a college degree and if I weren’t so fortunate to have married into a family who has been able to help support me in my educational, and career goals I’d be up a creek without a paddle. I still pay student loans yet I’m VERY limited in how much I can work. Again, I’m VERY fortunate because I was born and raised to be fierce and to give 110% to anything I strive for. I work long days and long nights to help our community and my family. I’m a Registered Dietitian Nutritionist and I’m so passionate about my job. I can’t even explain how much joy I feel when people come back to me and tell me that they have implemented something I taught them and that they are so much healthier now or that they feel better than they ever have. I live for the moments like the one I had the other day during a food demo. An elderly lady told me she doesn’t eat kale because she thinks it’s disgusting. I convinced her to try it and promised she could spit it in the trash if she didn’t like it. She tried it and she liked it AND took the recipe home to try it again at home. My point is, I volunteer in my community and I work but it is VERY hard for me to do these things and to do them regularly and consistently in my situation as Ellie’s mom. What does all this mean to you? We receive Medicaid. We are NOT a drain on the system. We work hard. We give back. We are like many other families out there who rely on assistance just to live an average life and give our children the best opportunities possible. We just want to be normal. Well, and sleep. We want sleep too.
We’re allotted 84 hours per week of nursing care. That’s 12 hours per day. In that 12 hours my husband and I have to sleep, work, run errands and grocery shop. And the kicker… it’s very rare we even have all 84 hours staffed. There is a nursing shortage and with the state of home care, many nurses don’t want to do the work. I can’t say I blame them based on some of the horror stories I’ve heard. However I know our nurses love working with us and they feel loved and appreciated. They are family now! More on that in another post… When we don’t have a nurse, either my husband or I have to be home with Ellie. Ellie must have a trained caregiver with her at ALL times. If we go somewhere in the car, there must be a driver, and a trained caregiver at Ellie’s side. Care doesn’t stop because we’re in the car. If Jeff and I want to go somewhere together we have to take both kids with us (it takes about 1.5 hours to pack Ellie into the car) or we have to have a nurse. This however, is an improvement because Ellie is growing stronger. Not long ago she was less stable and we always needed a second person on hand at home just in case we needed to call 911 or to have an extra set of hands to start oxygen or use the ambulatory bag while supplies were prepped for an emergency trach change. Just imagine how you’d plan your weeks without being able to get groceries or pick up prescriptions or pick up your second child from preschool while having to care for a child like Ellie. This is our reality.
For those of you who know my family personally, you know that we live a healthy lifestyle and avoid addictive and unhealthy substances (okay we do have a little sugar addiction but who doesn’t?). Ellie’s condition is genetic. It wasn’t an accident during birth. It wasn’t because I didn’t care for my body and the growing baby in my womb while I was pregnant. Everyone knows there is risk with having children but this lifestyle and Ellie’s limitations are not what most people think of when they make the choice to have a child. In fact, Ellie’s condition is so rare that she still remains undiagnosed. The doctors and geneticists will continue to study our family and seek answers and other families who may have the same condition. This is called SCIENCE. And thank goodness we can rely on science because without it, Ellie wouldn’t be here and a piece of our hearts would be lost forever.
This morning I finally found the inside part of Nathan’s bike helmet and it’s been repurposed. For now, it’s going to be used until Ellie can get a Headpod. I’m not an engineer but this is my best attempt at giving my child the ability to do more. Watch these videos and tell me it’s still not worth paying taxes to help children like Ellie.
I want to live in a world where people care for others and invest in the greater good.
I want to live in a country where our tax dollars are used wisely and therefore people willingly instead of begrudgingly pay their taxes, feeling like they’ve contributed to something important.
Thanks for listening. End rant.
It should not take this much time to get assistive technologies that can improve mobility, emotional stability, and cognitive development. The process needs to be easier and faster. Kids grow too fast and this time in Ellie's life is important. These tools are vital for her development. And haikus are fun ;)
Oh just a little fun! Both our kids love to be silly!
We just got family photos taken and they were the first professional photos we've done as a family of four. It was important to me to get photos that show who we really are. I wanted photos that were so beautiful that the first thing you see is smiles and warm hearts and not machines and tubing and how Ellie is "different". I love the photo of the kids upside down because this depicts the happiness in our life. I feel like photos like this allow me to visualize the beauty in our journey and see past the stress and add load we have in taking care of a medically needy child. You can see more of our photos and read our photographer's beautful depiction of our family in her blog post.
It's a rare occasion Mom get's in front of the camera since she's usually the family photographer.
Ellie's dad is pretty cool!
Nathan, Ellie's big brother, already knew his dad was pretty talented but now Ellie knows it too. Thanks to Bill from atmakers.org, Ellie now has several switch adapted toys. Jeff has been working hard soldering and rewiring many toys. Because Ellie has reduced strength and a lighter grip she's unable to push the buttons on most of her toys. She misses out on the cause & effect that is so excited for most babies and toddlers... until now. Ellie LOVES that she can make Violet her pal from LeapFrog work all on her own.
Somehow Violet is missing from the photo but you can see the switchboard.
Ellie is really enjoying the ipad
We've been trialing some communication apps on the ipad. Along with the apps Ellie has been playing a few games. She's getting pretty good at matching shapes but her favorite are the Sago Mini games. I'm pretty sure she's addicted. She knows how to figure all the games out and she talks to the little animals. It's sooo soo sooooo cute! I love that technology has allowed Ellie to do so much on her own that she wouldn't be able to do had she been born 10 years ago.
I don't know why this photo is sideways. You get the point.
Ellie's first hospital admission
Ellie recently spent 9 days split between two back to back admissions in the PICU. We had a very scary night that lead to bagging her for almost 5 hours straight and a ride in the ambulance. When we arrived at the ED there were about 15 people waiting for us in the emergency room. It was scary. Lots of people were asking me questions. I'd had two hours of sleep. I was exhausted. I cannot even explain how difficult it was to hand over my child to the professionals because her needs were outside of my abilities and scope of practice. I know everything about Ellie. i know what she needs when. This time I didn't know what she needed but I knew what I would be doing had I been in charge. I wasn't in charge anymore and it as very scary and so hard to sit back and watch and accept that the professionals know what they are doing. I'm so thankful for all the nurses and techs and doctors and respiratory therapists who helped save Ellie and get her stable quickly.
Ellie ended up being admitted due to pneumonia and atelectasis. Ellie had a partially collapsed lung. Cultures later revealed she had rhinoenterovirus. Later cultures for pseudamonas showed up, two types. On the next admission Ellie's cultures grew klebsiella. It's not surprising Ellie needed a little extra support from the hospital. That's a lot for any person's lungs to recover from.
After the second admission, Ellie came home with a shaker vest. It's made a world of difference for her. Her care is more streamlined and it's so much more efficient. It's so nice to not be beating her with percussors all day long anymore. We're so thankful for the shaker vest. I know she'll stay healthier longer now. I'm so glad I pushed hard to get her the vest and that her clinical outcomes proved what I'd been saying, Ellie needed the shaker vest!
Wash your hands frequently and stay home if you're sick. Keep your kids home if they are sick. Your kids get a runny nose when they are sick. My kid ends up in the hospital if she gets sick!
Accessible Home Build
So if you haven't heard, we're building a house. Our current house is a bi-level and our main living level is upstairs. It's very frustrating that to go anywhere even to the backyard we have to haul Ellie and all her equipment and her wheelchair up and down the stairs. It takes a lot of time not to mention strength. Ellie's dad recently threw his back out lifting her wheelchair and he's now also in physical therapy. Our new home is designed with wider hallways, wider doorways and an open floor plan. I am so excited about how much easier it's going to be to wheel Ellie around the house so she can join in all the family activities like cook dinner or going outside. Instead of stairs outside we'll have ramps so Ellie can get around. At some point if Ellie isn't walking yet she'll be in a motorized wheelchair. Her independence is so important for her mental and emotional health. Because of this, we're also doing a fundraiser to put an elevator (Ellievator) in our new home. At first we had planned the layout of our home in a way so that Ellie wouldn't NEED to go downstairs. While this is true (unless there is a tornado warning) we've realized over time that she's not going to remain a baby or toddler. Ellie is going to keep growing. As she gets older she's going to want to be mobile and independent and she will want to join her family or her brother to the basement. After learning more about kids with needs like Ellie we also realized we needed to build an area for Ellie dedicated to her therapy and therapeutic play. A safe space for her to work on her exercises (which are assisted as of now). We want to provide Ellie with the best life we can. She deserves everything she can to be as normal as possible. Ellie deserves to enjoy life and she deserves the close attention and proper tools to grow stronger. If you're already donated to the elevator fund, thank you! We truly appreciate your help and support!
Thank you for your love, prayers, and support!
March 4th, 2016 our miracle baby turned a year old. What an amazing year it's been! We celebrated her birthday with friends and family who were able to attend with a slideshow and award ceremony along with cake and cookies to thank everyone who has helped us in some way or another over this past year.
Once some edits are made and birthday photos are added the slideshow will be available here on Ellie's blog. Stay tuned.
I'm enjoying the memories that have been popping up on Facebook. They have been reminding me how far we've come and all that Ellie has accomplished in just one year. However, a year ago today I am reminded of one of the worst days of my entire life.
I felt hopeless and helpless. Nobody had answers as to why my baby couldn't move or breathe well or why she looked weird to me. Everything was scary. I thought she was going to die. I'd already started grieving the loss of my child because even though she's still here, in a way, I did lose a child. I lost the child I'd imagined I'd have. I thought I'd take my baby home after a short 1-2 day stay in the hospital recovering from childbirth. I thought she'd breastfeed and I'd be able to provide her the most comforting and nutritious food available. I had dreamt of the summer afternoons with Ellie in her baby carrier while Nathan played in the backyard and dug in his sandbox. I imagined her coming along with me on weekly trips to the grocery store and to run errands. I thought she'd get to snuggle with me at nap time and do all the things "normal" babies do. Instead of the experience of having a newborn I'd expected, like with my first child, my experience was one of the NICU and time spent away from my family and friends. It felt like I was stranded in a foreign country where I didn't know the language and I was all alone. This was one of the worst days of my life.
A year ago today I celebrated Registered Dietitian Nutritionist day from Ellie's NICU room and I remember feeling like Ellie was going to be sent home on hospice to die. "Happy RDN Day, your child is a vegetable" (RDN=Registered Dietitian Nutritionist). To this day, I still can't get that terrible joke out of my head but I can still see the humor in it. The only thing running through my head was that I, being a dietitian, loved vegetables so much that Ellie's condition must have been the ultimate gift to me.
I'm happy to announce, my daughter is not a vegetable, although she does love her veggies. We know that Ellie's cognitive function proves to be perfectly normal and besides the fact that she's got motor delays and low muscle tone, she's a happy, healthy 1 year old. We're so happy she's here and we love her dearly!
Happy Birthday baby Ellie and Happy RDN Day to all my dietitian friends!
It seems every nurse who comes into our house is super impressed by how I've organized Ellie's area in our living room, especially her suctioning equipment. I thought I'd share my setup here for other people caring for someone who has a trach and would like ideas.
We use the clean technique, not sterile. We wash hands as much as possible but sometimes there isn't enough time, in which case we use hand sanitizer. You'll find the regular alcohol-based hand sanitizer plus a bottle of sanitizer that does not contain alcohol and it's easier on my skin but doesn't dry as quickly.
The little wooden bin was something I had just lying around. I use it to tote my suction jars around if I move Ellie from her crib to a chair in the living room or if we visit Nathan's room to read books etc. I also use it to carry all the jars into the kitchen for washing twice daily.
For the jars I used mason jars with these drinking lids placed upside down in the jars. http://www.freshpreservingstore.com/ball-regular-mouth-ball-sip-and-straw-lids/shop/619937/?CCAID=FPPTPDRMSSL&_ga=1.253282767.752297543.1449539269 I had those lids on all the jars but I had the lids secured with metal rings. Over time, the metal rusted so I purchased the plastic storage lids for mason jars and had my husband cut and drill holes in the lids. If I wanted to spend the money I'd probably just invest in these instead:https://sproutpeople.org/sprouting-jar-plastic-ring/ in combination with the sip and straw lids inverted. The jars are great because they are easy to clean and dishwasher safe. Plus, doesn't everyone have canning jars?
All the jars are numbered and labeled to minimize confusion.
1. 1/4 vinegar, 3/4 boiled water for the first rinse.
2. Boiled water to rinse vinegar out of suction catheter.
3. Empty jar for dry storage to keep suction catheter clean before uses. The suction catheter gets changed at least twice daily.
The last jar is labeled "Neo" for neosucker. It's the snot-sucker for nasal and oral secretions. It's filled with just boiled water.
Ellie doesn't always get a change of scenery because she has so much equipment. I had my husband design and build a tray for the bottom of our ventilator stand so when I wheel the vent around the house I can just take all the suctioning stuff with me. Ellie needs quite a bit of suctioning so leaving the machines in another room isn't safe. If we leave the great room we also hang her GO-Bag on the basket of the vent stand. Here's what you'll usually find on her stand when we travel around the house:
Do you have a child on a ventilator? What tricks for making life easier do you have to share with us?
P.S. Maybe in the future I'll post our packing routine for leaving the house. Anyone have a great all-inclusive checklist?
Courtney is Ellie's mom. She and her villiage have been raising Ellie (and her big brother Nathan) and learning how to live with and manage life around Ellie's physical disabilities and special needs. It's not easy but our villiage is amazing. Thank you to all of you who support us, love us, and provide hope, wishes and prayers.