An X-ray and two appointments today (geneticist and surgeon). The geneticist went well. We have a new one. Our prior one left. I like this new one though. She seems good. We discussed a lot (whole genome testing, reanalyzing her whole exome sequencing, doing genetics on both grandfathers who she inherited genes from and weContinue reading “Geneticist and surgical follow up”
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The weight is heavy today
The weight of Addyson’s illness is winning today. I’m struggling. She gets one of her meds from a dr in GA. (No issue there) Except that it expired yesterday, so the school can no longer give it to her and she can’t make it through a day without it. We found out that MD pharmaciesContinue reading “The weight is heavy today”
Motility & hearing update
Today Addyson had her follow up with her motility dr. This appointment always worries me. He can be stubborn. I believe him and believe he has Addysons best interest at heart but sometimes we just don’t see eye to eye. Today he listened. He agreed that if Kennedy Krieger’s feeding clinic had a recommendation thenContinue reading “Motility & hearing update”
Eye appointment
We went to the eye dr today just to get it checked. I needed to know if it was okay or not. The eye dr was amazing. He explained her tearing issue. You Have More Than One Type of Tear Tears are essential to help you see clearly and maintain the health of your eyes.Continue reading “Eye appointment”
This girl 🤦🏻♀️
Today addyson had her first feeding therapy session. It went well. I was very pleased. Her feeding therapist said she wishes we could help other realize how feeding tubes don’t ruin your life, they can actually give you your life back. Addyson chimed up and said not can it does. She said it did improveContinue reading “This girl 🤦🏻♀️”
Gi clinic
Today we met with Addysons gi and nutritionist. It always a stressful appointment. Today’s focus was on Addysons calorie count. They need her between 1500-1800 a day. She is not hitting that goal. So today we agreed to meet in the middle. We will restart an appetite stimulant while starting formula feeds in conjunction withContinue reading “Gi clinic”
Busted balloon
This girl 🤦🏻♀️ that’s all I have to say. We were supposed to have a chill evening at softball but this girl had other plans. when her tube balloon busted all she kept saying was can I still go to practice. When we told her no she got even more upset. She said I don’tContinue reading “Busted balloon”
Clinic day
Today we had gi clinic at chop. It went well. Overall I’m pleased with where we are. We discussed her weight. We are going to do a three day food log and follow up with nutrition on a better plan. we did day 1 today so 2 days to go. Bowel regimen: we are goingContinue reading “Clinic day”
Busy 2 days
Today we had three appoints (ent, surgical follow up and mito). Ear appointment: went well. Miss addyson has her hearing aid and is adjusting to it. It’s going to take some time but she left the office being able to put the hearing aid in and out by herself and use the control apps. SurgicalContinue reading “Busy 2 days”
Vacation post surgery
We went on vacation this past week. It was so nice. We all relaxed for a bit and did lots of site seeing. The kids experienced things they had never done before (indoor sky diving, ropes course, bungee jumping, virtual reality, flight simulator and more). We watched Addyson conquer fears and we watched Ethen helpContinue reading “Vacation post surgery”
