Our little sunshine ☀️

Our little world is changing quite a bit and we’ve had to make some pretty big decisions.

Seattle Children’s 

We really had a wonderful visit. We met with the neurologist and rheumatologist for over two hours, where they were able to meet Ellie, evaluate her and fall in love with her. While we were hoping for an aha moment, they are just as baffled as the rest of us. They did reiterate that the steps that have been taken thus far by our Boise team were exactly where they would have started, which was reassuring to hear. They will be collaborating with our Boise team going forward and have a path that we’re moving forward with, starting with a repeat MRI, lumbar puncture and more labs. They are still thinking it’s some rare disorder (metabolic or autoimmune) caused by a genetic condition. 

Following our visit, our Seattle team discussed Ellie’s case with bio chem genetics and they have scheduled a visit in July. While that’s a bit further out than we’d like, initially we were told at least 1-2 years before they’d be able to see her, so we’ll take it as a win. 

Growth and Development 

Ellie still continues to struggle putting on weight. She hit the 20 lb mark but continues to waffle between 19-20 lbs. Between the concern of weight gain and aspirating while drinking her formula, we have made the decision to move forward with a feeding tube. In meeting with her care team and discussing all scenarios, we will be moving forward with a g-tube. This was not an easy decision to make—the fact that throughout everything Ellie has not been in pain and is still the happiest baby, makes this even harder. 

How do you put your baby through surgery and the pain of recovery (8-12 weeks)? Mom guilt definitely doesn’t help. But we have to do with us best for her, and while it is an invasive procedure, the rewards far outweigh the risks. Her little body has been working so hard trying to gain weight, that we haven’t been able to focus on her development as much as we need to. Meals take about an hour and when they want her to eat three meals and two snacks a day, we are in the high chair half of the day. Did you know when feedings last more than 30 minutes, the baby actually loses calories? Their little body works so hard sitting in that position, and especially in our case when just sitting is a workout for Ellie. 

Surgery

We are very fortunate to have such an amazing care team. In working with all the pediatric specialties, Ellie has been scheduled April 5 to have everything (g-tube, MRI, LP, labs) complete at once, meaning only one anesthesia event. Ellie will likely be in the hospital two days and the recovery is much more extensive than we anticipated, but we will get through this together, along with our very special tribe of friends and family, who just love Ellie so much—some of them haven’t even met her yet, but she just melts everyone’s hearts ♥️

Rays for Rare

We are fortunate to have found such an amazing resource for families like ours. Rays for Rare is an organization that offers resources and support for medically fragile children and their families. In a very short time, we have connected with other families, and it has been wonderful to talk to others who have been through what we’re going through. We’ve always considered Ellie our little ray of sunshine, so it is only fitting to find such an organization. If you are in a position to volunteer/donate to an organization, it would mean a lot to us if you considered this one. 

We have also made a number of connections with other families/patients while at the hospital for misc. appointments and I would encourage you to do the same. Talk to the person next to you. You never know what is going on in their world and a little kindness means a lot.

Changes 

This week has been very emotional for me. After nearly 12 years, I have made the difficult decision to resign from my career at St. Luke’s so I can focus on Ellie and our little family. I have been very fortunate to have a job that I truly love, and such an amazing and supportive work family. Every major milestone in my life has been while I’ve been at St. Luke’s. My hope is that this is only temporary and that I’ll have an opportunity to come back in a couple years. Until then, we will be patients and supporters of a truly amazing organization.

A lot of people have been asking what they can do for us, and to be honest, the one thing that has been helping us the most, is your support—send us a text, IG/FB message, email, telegram, mail, even a phone call, just to know you’re thinking about us. It really does mean the world to us. 

I am so lucky to be this sweet girl’s mom and we will continue to do what is best for her. We do not take this job lightly and will love and cherish these girls, because they are worth it, every single moment.