You know I have read a lot about gut health and healing from the inside out, but our story is quite different.
Did you know she was seen for SEVERE reflux and had a gastro specialist because even at 18 months she wasn’t eating table foods and was aspirating her milk and baby foods?
Did you know she was seeing a pulminologist and struggled with breathing? We once moved her room upstairs and she wheezed so bad during her nap my husband had to take down her furniture and move her back to a room with wood floors? How about that she had a bronchoscope and we were told eventually she will have to have her throat stretched because she has a narrowing in her airways they think was cause by her being intubated at birth?
Well maybe not the catalyst, but the ball started rolling after her inpatient stay for staph on her leg. She was on a 30 day round of the most potent meds you can put in a 2 year old body and 5 topical steroids at once. She was diagnosed with a severe ear infection while on the meds. THAT SHOULD NOT HAPPEN!!!!
We started having her tested for auto-immune disease…23 vials of blood from a baby…that came back inconclusive. So here we were once again scratching our heads.
Finally, after this visit we were given the go ahead to see a pediatric dermatologist. We got in and found a plan. We did that plan which included oral steroids, topical steroids and about a 45 minute a night skin prep…
Our bed time was not even pleasant as this chart looks nothing like our night. Cross all that sweet routine out. And write go potty and prep skin…put topical meds in specific spots based on thickness, cover with aquaphor, put pjs on and put to bed. Nothing sweet, bath time fun didn’t exist. It was sheer exhaustion and worry creating our next steps. Just basic survival for what was our current situation.
Our night continued like this: Wake up in middle of night. Do ritual again and change Jammies as wounds wept on the ones she was wearing and then dried, stuck, reopening wounds.
After 2 weeks of the craziness we had a follow up with the dermatologist and he had a new option…
Options were GREAT. I was willing to try ANYTHING!
Part 2 coming tomorrow!