Providential

I've been meaning to tell this story for some time, but am glad I waited til now. 'Cause now we have some photos to go with it! If you know me on FB, you may have seen some of these details, but here is the full story :)

After Sophie's hospital stay in August for the virus, she was sent home on oxygen and a feeding tube. We still had no answers as to what was going on with her but we knew she had a collection of symptoms that weren't adding up to anything good: Failure to thrive, episodes of panting, dropping oxygen levels when sleeping or tired (desats), crackles in her lungs, reflux, working hard on breathing (retractions), chronic cough and turning blue with high fever.
 
Not good. And very discouraging to have no answers.

About a week after her August discharge, my brother called me to say he had read a news article about a little girl who had a service dog to carry around her O2 tanks. She needed O2 because she had a lung disease. Upon researching the condition, my brother said it sounded like they were talking about Sophie! Every symptom!

And with that, we were set on the path to discovering what was wrong with our girl. Praise God!

The condition we suspected is an Interstitial Lung Disease called NEHI (Neuroendocrine Cell Hyperplaysia of Infancy) and is very rare. Most pediatricians haven't heard of it and even a lot of pediatric pulmanologists don't deal with it enough to be familiar with it. 

Our pediatrician referred her to a pediatric lung specialist here and got her in to see him immediately. This doctor scheduled her for a several day stay in the hospital to run diagnostic tests. NEHI can be diagnosed by CT scan but usually by lung biopsy. Given Sophie's small size, we didn't want to jump to the biopsy and so were hoping that the typical NEHI markings on the lungs would show up on the scan if that's what she had. And they did! Although mild, the doctor could see ground glass opacities in her lungs, the classic markings of NEHI.

There is no cure for this disease and the only treatment is oxygen supplementation and nutritional support as needed. So, Sophie is on a special formula to help her grow and O2 whenever she is asleep and as needed during the day.

BUT, back to the story!! After the dust had settled a bit, I went back and reread the news article about Alida Knobloch. Only to discover that the family lives an hour away from us! I contacted them and they have been wonderful in their encouragement, information sharing and support.

And this past Saturday we were able to meet them, spend some time with them at their home and then attend a fund-raiser for Alida's NEHI research foundation. We had a really great afternoon with them and found them to be so generous and helpful...they gave us this great back-pack to carry the oxygen tank in that doubles as a diaper bag. So no more lugging around two different bags for Sophie. It's already helped me so much the past two days!

Our little NEHI girls with the famous Mr. Gibbs!

Sophie and Arella, Alida's little sister who is the same age as Sophie

Jack had a great time playing with Alida and Mr. Gibbs

Debbie was so kind and helpful in giving me all sorts of tips about dealing with daily O2

Us with the Knobloch family!

Maybe Soph has a Mr. Gibbs in her future!

Both the kids loved the zumba music during the fund-raiser

Alida was really sweet to Sophie! 

We are so thankful that Alida's family shared her story and that God brought it to Stephen's attention. Many of the kids who have NEHI, go through months and even years of testing and different medications and treatments before they are diagnosed correctly. We are so thankful that Sophie has been spared all that and we now know what is wrong with her. And that this family, who has already dealt with this condition for three years, lives so close to us!

Praise God for how he works and weaves all the pieces of our stories together in his beautiful tapestry!