Just talked to pectus surgeon in Arizona…. Super nice guy. He talked to A too. He said he agrees her pectus is severe and needs repair. He said that he would do 2 bars for 4yrs (vs 3) since E has EDS he wants to make sure that A doesn’t and that her chest wallContinue reading “Pectus repair and college”
Author Archives: mdaugherty1222
E went yesterday to get his Mara appliance put in. He got it installed, but then it came undone on day 1. Today, my dad took him back to the orthodontist so it could fixed, if you recall A had a similar situation with her braces and she recently also had her MARA appliance break.Continue reading “Always Confusing….”
Addy heart monitor results.
Just got A’s heart monitor results. The holter/Zio monitor showed a higher heart rate for age, her Dr recommends trialing a very low dose of a beta blocker called atenolol. He mentioned using Corlanor (a lot of pots kids use this med) but insurance will not cover that without a trial of the atenolol first.Continue reading “Addy heart monitor results.”
We are super proud of E. He went and took his college placement tonight and tested into college level English (reading and writing), with no non credited make up courses required!!! He also got his acceptance from Anne Arundel community college and Howard community college. Now to get him signed up for his first class!!!
Aadp and echo/ekg
Let me just start with what a long day… And thank goodness for our friend sandra who went with me and helped with the craziness of the day. Yesterday was ridiculous and I didn’t know if I should laugh or cry…. But if yesterday wasn’t friendship, I don’t know what was. EKG looked good. EchoContinue reading “Aadp and echo/ekg”
Our new motility gi & surgical update
Our motility gi Dr who we have had for years retired in December, so today we met our new one. I liked her… She listened to our questions and answered in normal everyday language. She also agreed that if meds / protocols aren’t working, then let’s stop them, so today we removed two meds fromContinue reading “Our new motility gi & surgical update”
For the past two weeks Addy has been wearing an actiwatch. It was used to measure her awake time throughout the night. The data is just what we expected. She is awake at night way more than she should be. The charts below are the data from the watch. Anything above the top yellow barContinue reading “Actigraphy”
Today wasn’t the worst day we have had physically with addy, however I think it was a reminder, a slap in the face that here we are almost 12 yrs later and with a team that has known her for years and we still get deer in the headlight looks or shrugs of I don’tContinue reading “Tough day”
Anxiety and Friendship
April has been busy as we expected. Addy had her MST/PFT test, Ethen had his signing day, Addyson has a bunch of appts next week, I have had pre-op Appts (for my surgery on 1 MAY) and then we had a camping trip planned. Plus work, school, softball and karate. Along with a few otherContinue reading “Anxiety and Friendship”
Metabolic stress test and pulmonary function test
Addyson keeps things interesting…. We were going for her metabolic stress test and pulmonary function test, but she decided to be addyson and in true addyson fashion her Bp plummeted from 113/61 to 50/36 and hr went from 97 to 170 instantly. They urgently stopped the test…. And said no more today. They were notContinue reading “Metabolic stress test and pulmonary function test”