Ezrah JOY's Fight

He's officially official. Please give a warm smack on "the bum" (or back, whichever) to our NEWEST U.S Citizen! The Nelson 8 witnessed a beautiful ceremony today at WSU. It really was a special event. Today is historic for The Nelson Legacy. (Thank you for understanding why we didn't invite others. If you know Tony, you know he's not one for attention. After this last year, I think he's "attentioned" out.) It was really just a day we wanted to celebrate with the kids. I am just thrilled that they all cleared their schedules today, and we "home-schooled" in US History, hard. (Naturalization Ceremony!? Doesn't get more American/historical than that!) A brief health update: Tony has a vascular ultrasound tomorrow at OHSU that we would really love covered in prayer. (It's at 1pm.) As many remember, the last ultrasound landed us back at OHSU for 5 days because of the newly discovered blood clots. Tony's been off blood thinners for a ...

 December Update - Kinda a big one.  Few people know, but Tony had another recent "flare-up" with his "sub-par," VERY damaged pancreas that began on Sunday and lasted two days. (Yes, he took his citizenship test in pain, cause you don't reschedule with the USCIS.) But, we aren't messing around, and so today (Wednesday) we found ourselves back at OHSU for a check-in. (Remind me to make a PowerPoint Ted Talk on TRAUMA/PTSD.)  We left OHSU with a better plan on how to manage these "flares" so that in the future, he doesn't have to miss MORE work time. (2 days off this week) And we left with future lab draws for some genetic testing. Jury says this is all still "idiopathic".... so, in a true episode of "House" fashion, we're still "guessing" on what to stay away from as far as nutrition. But, this was the VERY first time we'd heard about options should this ever become chronic and/or progressively worse. There ...

  November Update: Dare I type it....but life has been relatively boring on the medical front for Tony & Ezrah. Tony has been stable for several months, and we will meet with Hematology in December. He is still on the dockett for a repeat CT, and we will do another round of baseline labs to check how his pancreas is doing. One of the "concerns" has always been his insulin levels holding steady with a now compromised pancreas.  Ezrah had a follow-up with Rheumatology last week at Randall's. We have FINALLY found a prescription that keeps her pain at bay. THIS IS HUGE. Her doctors would like her on it for a year. She has to do a blood draw (pray for our girl) next month to make sure her liver and kidney are tolerating it well. She has NO signs of arthritis and she no longer limps. This time last year was such a scary time. We just didn't know what we were dealing with, and she was in and out of a wheelchair having one surgery behind her. What a kid. Her resiliency i...

 A lil' October update.  *Tony is stable. We meet with Hematology in December.  *Ezrah is stable. She's on a new prescription that seems to help with her nighttime pain. She has gone 5 nights (by her own choosing) WITHOUT medication, and the pain has not returned. She will have a repeat CT scan in the coming months to see if the "spot" in her bone has been reduced. We meet again with Rheumatology next month. *Micah. For those who saw my IG post. His dominant hand had a run-in with a hedge trimmer while working at our friends house, which landed us in the ER. His hand/fingers were stitched up. We are thankful. It could've been SOOOO MUCH worse. But, he has ALL of his extremities and was only out of tennis for 2 weeks. He's playing District's this weekend, and has already secured his spot for Regionals (Bi-Districts) next weekend in Tacoma, representing Prairie High School.  I'm fixin' to contact the local hospitals for my own parking spot or at LEAS...

 (A last ditch effort to rendezvous in Seaside and beat the PNW heatwave) *UPDATES* 9/1 Ezrah's recent surgery couldn't have gone better. Her pain was minimal, recovery was smooth, and we REALLY thought the cryto ablation worked... until the pain on her tibia returned the night of the 27th, 28th, 29th, 30th, and again last night. It's the same pattern. She feels ok during the day, but at night, the nerves start firing, and sleep becomes elusive. SUPER common response to an Osteoid Osteoma. We have a routine Rheumatology check up at Randall's next week with MORE intel to show from the summer (circulation issues and random swelling joints), but, alas, I'll be shocked if we get an auto-immune diagnosis. The rheumatologist simply says her symptoms, "Don't add up." The cycle/runaround is never ending.  Tony is stable. His diet is SUPER restricted, but he's had no issues since our last visit where the drain was removed. His lifestyle has done a 180, thou...

               (The anxiety cocktail in FULL effect) What. a. day. Ezrah is such a trooper! I have three initial thoughts.  1. Modern medicine is amazingly hilarious, entertaining, and miraculous. 2. Seeing blood on/near/oozing out of my child will NEVER not make me want to barf my guts out. I STILL have a pit in stomach. Indefinitely. 3. Pediatric specialists have wings. Of this I am convinced. They are ANGELS. Sent from the Lord. Dr. Horikawa was able to do the ablation, but NOT the biopsy. Ezrah has had a recent string of events that have him searching "broader" about what is going on. Good ol' "rheumatology" and "auto-immune" were mentioned ONCE again. (If I had a nickle)  But, he is hopeful this ablation will resolve her pain IF this is a classic osteoma. Time will tell. And we meet once again, with Rheumatology, with her new symptoms in September. A repeat CT in six months through IR to follow today's surgery/progress. The biopsy d...

Hi Friends! I know it's been a minute, but I just wanted to send a quick update as we have some BIG news this week. Unfortunately, Ezrah will undergo another surgery THIS Thursday morning at Randall's Children's Hospital in Portland on her leg. We've been told to expect about 5.5 hours. (You know how much I LOVE "time estimates.") Her pain has returned, and the plan is to attempt a cryto ablation as well as biopsy the "mass" that they still see present in her tibia. We are hopeful that this will be her final surgery and bring her some MUCH needed pain relief. Our hope is that recovery will be swift. If you've followed our adventures, specifically Ezrah's journey, you'd know these things are so so so hard for her and bring paralyzing anxiety. We sure would covet prayers this week and beyond, during her recovery.  As for Tony...he is stable and doing well considering all things. He will have a follow-up with Hematology in December, and a re...