It's hard to believe Ellie is 3-years-old already. It's hard to believe we've been living life with a mini emergency room that travels with Ellie everywhere she goes including from room-to-room in the house and to the backyard to play for almost 3 years. It's hard to believe we've given up privacy and quiet family time to welcome help and nurses into our home and our family for 3 years.
To be honest, I wasn't looking foward to this day. I was afraid of dealing with my mind swirling with the excruciatingly painful images and emotions of Ellie's first day and week of life. It was a really dark place for me. I was afraid too because I recently went off my anti anxiety/anti depressant medication that I was prescribed in the first week of Ellie's life for "situational depression". I wasn't sure I'd be able to handle today without it. I'm happy to say, today has actually been okay. I think the happy memories and experiences finally outweigh the sad. We've had so much to celebrate and so many little milestones that it's almost hard to believe Ellie was as fragile as she was.
Our family accomplishments with Ellie as a 2-year-old
3-year-old Ellie is going to accomplish so much more!
Seeking night nurse to join #Teamellie (Edit: ANY SHIFT)
UPDATE FEB. 29TH, 2018: ALL SHIFTS NEEDED! Additional hours available through the end of May beyond the schedule posted above.
Seeking reliable, kind-hearted, night-owl nurses to work with our super cool (yes we're biased) almost-3-year-old. We are highly involved parents who have managed every aspect of our daughter's care for her entire life. We're looking for nurses who are ready to learn her regimen and maintain high quality care.
We are willing to provide training to nurses willing to learn.
Our nurses are like family to us. We promise to treat you kindly and with respect. We also understand you probably also have a family so we try to be as flexible as possible with your scheduling needs.
We will be screening candidates, but if selected you will need to coordinate employment with the agency we use. The job (our home) is in Washtenaw County, MI.
Please email Courtney (Ellie's mom) at firstname.lastname@example.org
Keeping Ellie's suctioning supplies clean is imperative. Without a streamlined system to keep our supplies clean and a good schedule for replacing catheters, Ellie's risk for infection would be much higher. Below I'm detailing what supplies we use, where to buy them and how to keep everything clean and rotated.
We like to color code our jars and lids and keep them different sizes to help avoid confusion. In the heat of the moment during an emergency you want everything organized and labeled as clearly as possible. We like to use the color green for the "dirty" jars/lids and purple for "clean". By using a shorter jar for nose suction, it helps avoid confusion so you know the nose sucker always goes in the short jar.
Our goal is to change out the jars and suction catheter twice daily. Once daily is the recommendation we were trained on but you can't be too clean with this stuff! We put the jars and lids in the dishwasher when we run our dishwasher at night and we make sure to run a sanitize cycle. We let the jars and lids air dry and then store them in a clean, dry cupboard until we need them. It's good to have at least 3 sets of jars/lids to rotate, two in the dishwasher and one in use each day.
Today I got a call from the genetics department. Ellie has a diagnosis that explains all of her symptoms. The our test from the whole exome sequencing was re-run to compare our results with current findings and data. Jeff, Ellie's dad, and I both carry the the genetic material responsible for Ellie's genetic variance with the TTN gene. Limb-Girdle Muscular Dystrophy type 2J also known as Salih Myopathy is newly discovered since Ellie's birth. We'll learn more when we meet with the geneticist in October. If you want to read more there is some info from the National Organization for Rare Disorders (NORD).
For Ellie, having a diagnosis will be helpful. For example, we're more likely to have help from organizations such as the Muscular Dystrophy Association and may be elegible for assistance for various things because she has a diagnosis where as before because she didn't have an MDA diagnosis we weren't eligible for support. For science and research, this is good. We have a name and something searchable. There are others diagnosed so we can learn from them however this because it's extremely rare there is little information so far.
For me a diagnosis is overwhelming. I have so many feelings. Before a diagnosis I could pretend, and hope and dream that some day all these difficulties would all disappear. That Ellie would walk and breathe on her own and we wouldn't need all this extra equipment and that she could be independent. She still might do all these things but instead of dream, I can research and learn how this disease/disorder has affected others. A diagnosis makes it real. It's scary and right now, I'm afraid to know more. It's a lot me to digest and a major change for me as far as mindset. I'll remain hopeful and still work very hard to provide and do the best I can for Ellie. That won't change. For today, I need time to grieve. Tomorrow is a new day. #TeamEllie
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.