Why does every one of addysons doctors say “she’s one that sticks with me and makes me think”? They all also say man, she’s still full of spunk even years later. Let her keep that sass it makes her the fighter that she is. Today we saw her pediatrican and we talked through everything. WeContinue reading “Pediatrician check up”
Category Archives: Uncategorized
Dentist
Dentist appointment went well for both kids. No cavities. Addysons ready to begin with orthodontist… Ethen needs to wait for his last two molars to come in. The kids were able to see the blue angels today while in the dentist chair. Ethen was so bummed he had to leave school early. I really doContinue reading “Dentist”
Update
My ear: it’s about half way better. Not as retracted but still not 100%. Ent said stay on meds for another 30 days. We are at least headed in the right direction Update on hip: this past weekend really Aggervated my hip, it was really throbbing today. I think the weather may have played aContinue reading “Update”
Team impact- gw
We are so thankful for team impact. Team impact is an organization that pairs kids who are chronically ill with a college level sports team. The child becomes a honorary member of the team. Addyson was paired with gw and she’s loving it. Today was the last weekend for them to play at home soContinue reading “Team impact- gw”
Sfn and qsart testing
Today’s appointment was an appointment addysons neurologist wanted us to get back in January but today was the first available appointment. The neuromuscular Dr noted some abnormal sensory findings in regards to her feelings in her legs. She agrees we should proceed with the testing for both small fiber neuropathy as well as large fiberContinue reading “Sfn and qsart testing”
Chkd- pectus appointment
Today we went to Norfolk to meet with a surgeon regarding addysons pectus. We were pleased with the surgeon. He talked to us about when would be ideal to do surgery, what surgery would entail, what the recovery would look like and more. He also presented us with a non surgical option that we optedContinue reading “Chkd- pectus appointment”
Day 2
Before heading back to chop for day 2 of appointments with today being a full day in clinic we decided to enjoy the farm this morning The kids had a great time getting out side and seeing all the animals. Everyone’s favorite is luna, the camel. Ethen and randy got to go to a harryContinue reading “Day 2”
1st appt this set
First appointment of this set went as expected. Rheumatology changed dosage on addysons fever meds since in 6 months she’s had 6 fever episodes. He is hopeful this bump up will stop the flares. If it doesn’t work then we are to call and discuss another option. Tomorrow is the big day- aadp clinic. HoursContinue reading “1st appt this set”
CT for pectus
We finally got Addyson’s CT scan for her pectus excavatum done. She has a pretty deep Haller Index. We see a surgeon on April 12th to discuss
Whole Genome Sequencing
Addysons Whole Genome Sequencing came back after some mix ups. Her blood work from today also came back abnormal In her genome: They refound her MEFV Gene and her CHRNB2 Gene. They also found another gene: UGT1A1 *1/*28. The ugt1a1 gene means that she is a Intermediate Metabolizer. We were told that this means thatContinue reading “Whole Genome Sequencing”
Beaming with hope 